On Friday 22 November my dad turned 62 years of age. On that same day I had a visit from Guide Dogs booked in, which had been rescheduled from the week before due to bad weather. They wanted to meet my partner’s pet dog Eefie. She is a lively 5 year old Collie. When I was put back on the waiting list for a second dog, I did mention that Eefie would be moving in, but this was the first time that Guide Dogs wanted to meet her to observe her behaviour and compatibility to live with a young Guide Dog.
I am not going to lie, I was nervous about the visit since Eefie doesn’t give off good first impressions. She has a bad habit of launching herself at the front door and barking crazily whenever anybody knocks. This is by far her worst attribute. She has actually come on leaps and bounds in recent months. There was a time where she barked endlessly. I couldn’t fuss Calvin, play with Calvin, spend Calvin or even utter Calvin’s name without her protesting. This has now all been rectified with the help of a dog trainer and life is much more pleasant for everyone.
In spite of Eefie’s progress, the trainer was firm in saying that Eefie’s behaviour needs improving before a new Guide dog could be introduced into the household. Whilst Calvin isn’t influenced by her outbursts, a young dog is very impressionable. This news wasn’t a surprise, but my heart sank somewhat and my eyes pricked with tears. The trainer has helpfully given some tips and advice for us to work on.
After delivering the gloomy news, I was then stunned when in the next breath they said there was a potential dog for me in the car. My mind rushed with emotions and my tummy went all funny. Guide Dogs had already informed me that I wouldn’t be matched before the year is out and I had just been told that I couldn’t have a new Guide Dog until Eefie’s behaviour was better. Now all of a sudden there was a potential dog in the car. My mind was blown.
The first thing I was told is that he is a big boy. My interest peaked immediately. Another supersize dog, how exciting. I then learnt his name. Riley. I remember hating Calvin’s name at first and whilst I didn’t hate Riley I wasn’t overly keen. I was pleased to discover he was a black Labrador cross retriever. Of course I can no longer see colours, but knowing he would look the opposite to Calvin would hopefully avoid the similarity comments from others. My hope is that my future Guide Dog can be their own canine and not live in the shadow of Calvin, but I am hyper aware that I keep making comparisons myself.
Bubbling with emotions, it was time to meet Riley. The trainer and I both quickly realised that Riley is in fact much smaller than Calvin. Never mind. Riley wasn’t particularly interested in greeting me. I think because we met outside. Before setting off on a walk, the trainer made it clear that this wasn’t a matching visit, as Riley wasn’t her dog. Riley had actually been matched with someone else and started training with them. However, after 3 weeks the person decided a dog wasn’t for them and Riley had been returned the week before.
A 20 or 30 minute walk was suggested. There is a block route I enjoy doing which takes 40 minutes. Despite being 10 minutes longer than ideal the trainer approved it. As soon as we set off I was delighted by the speed. Nice and brisk, similar to the pace of Major who I walked on the assessment day back in September.
After 5 minutes the trainer took the support lead off and let me go solo with Riley. I didn’t think much of it at the time, I was happily going along with Riley, trusting him completely. Riley was working really nicely, not distracted in the slightest, fully focussed on the job in hand. I had to smile to myself when I didn’t brush any bushes or over hanging branches on a certain section of the route. I didn’t realise it was physically possible to avoid them, accepting that Calvin had no way of guiding me away from them.
I put Riley to the test as we walked over a motorway bridge and he scored top marks as he didn’t flinch at the racing cars below. As we approached a downhill section of the route, I really began to feel the speed we were travelling. Not being used to the fast pace and not being as fit as I was before my knee operation, I am ashamed to say I got a stitch.
As we headed towards home Riley tried drifting down a couple of driveways and attempted to do a 360 degree turn on a crossing island, but other than that he was a star. I felt so confident with him that I felt I could just start working with him there and then. What Calvin lacks in guiding he makes up in personality. What Riley appears to lack in personality he certainly makes up in guiding ability.
Unknown to me whilst walking the trainer was videoing us and texting Riley’s trainer. So just like that we were declared a match and informed training would start on 6 January providing Eefie’s behaviour improved. I was over the moon.
The day was not done there. Riley now had to meet Calvin and Eefie. This was done outside. First up Calvin. It was a truly lovely moment. Calvin came bounding out forgetting he is nearly 12 and Riley became animated for the first time. The pair entangled themselves playfully as if they were long lost friends. Eefie was not so welcoming. The trainer explained that she was displaying nervousness and she reacted when Riley got in her face. After that Riley was very respectful and submissive, which Eefie appreciated.
Last Friday Riley came to visit with Jenna who will be my trainer on class. We took all of the dogs for a short free run to see how Eefie would react. She did pretty well thankfully. To be honest I had no faith in her and thought it was the end of the road. Once we returned home Riley got to come inside for the first time with Eefie kept on the lead. Naturally Calvin and Riley played boisterously and Eefie barked about it. Riley spent no time in exploring his new home as he trotted upstairs by himself to check out the sleeping arrangements. He was satisfied with the choice of toys on offer and merrily chomped on a bone. He even came over to get some fuss. Eventually Eefie was let off the lead. We do need to be on alert with her behaviour, but I am hopeful that we will all live happily ever after.
Before Riley left I was given the opportunity to walk with him again. Jenna hadn’t seen us work together in the flesh and I guess this was the official matching visit. We did a shorter block route this time and Riley impressed me once more with his guiding skills. The match was confirmed.
So here starts a new chapter. I am amazed that I have been matched with a Guide Dog that meets all of my requirements. Perfect pace, spends on concrete, clean on walks and no existing health conditions. It is sad that Riley was rejected by his first owner. I am going to do everything in my power to ensure that he has found his forever home.
Friday 6 December 2019
Friday 18 October 2019
19 Months
Waiting requires an indefinite amount of patience. It has now been 19 months since I was put back on the waiting list for my second Guide Dog. Around this time 10 years ago I had a similar wait time for my first Guide Dog and then I got the call to say a match had been found. Of course that was Calvin who at 11 and a half is amazingly still working for me. His workload has been significantly reduced, but whilst I wait for a new dog, I really appreciate him giving me my freedom.
I have kept it no secret that I have been dreading the day Calvin has to retire. However, my perspective on that has changed somewhat recently. Last month I was invited to an assessment day at Guide Dogs with 5 others who have also been waiting a long time for a new dog. I was surprised and a little embarrassed to be the only one still working a dog.
At the start of the day we were advised that nobody would be matched that day, but the potential Guide Dogs would be ready for training around November. Some of us walked the same dogs and not everyone walked the same amount of dogs. I walked 4 lovely canines.
First up was Vicky, a pure retriever. She was such a calm sole. She walked at a similar pace to Calvin and didn’t seem to put a paw wrong. It was a bit of a novelty walking with a dog that didn’t appear to get distracted. Whilst walking with her I was told she wasn’t a fan of buses, was quite submissive and spent on gravel. Ideally I would like a dog that could spend on concrete. I’m no expert, but I can see her being matched to a nice old lady or gentleman. Her characteristics just didn’t seem to fit my lifestyle. Nevertheless I was impressed with her work ethic.
Next up was Holly, a tiny pure black Labrador. Now, if you asked me what kind of dog I would like next I would have told you I want another male giant. Holly dispelled all of my previous desires. I absolutely fell in love with her instantly. She oozed personality and I could see Calvin adoring her and she him. Again she walked at a similar speed to Calvin and also worked more like him too. She has had some inconsistency with trainers and so wasn’t the cleanest of workers. I was told her training might be extended because of this. I enjoyed the wild walk, it was just what I was used to. If I could I would have taken her home there and then. She has the potential to become a great Guide Dog and even better she spends on concrete.
After being sold by Holly, I thought there was no way another dog could top her. Then I met Major, a yellow Labrador cross retriever. Again if you asked me what kind of dog I want next, I would have said one that isn’t similar to Calvin. In my bias opinion Calvin is the world’s best dog, so why wouldn’t I want another? Major came over all waggy tailed and straight away picked up a stick off of the pavement. Smaller in stature to Calvin, I immediately nicknamed him MC, mini Calvin. Won over by his personality, I was then wowed by his work. Calvin and I get to places in good time, we stride out down the street. I have never thought Calvin is too slow. Calvin gives me everything I want from a Guide Dog. I have never wished for more. Major gave me a taste of what I am missing out on. The ability to not stride, but sprint through the streets. The feeling was truly euphoric as he whizzed through Leamington town centre, slowing where necessary. Major was majorly awesome. I don’t know what he spends on. In a way I don’t even care. A dog that can work like that is worth a compromise on something like spending.
Finally, poor Quinka, another yellow Labrador cross retriever (darker than Calvin and Major) had to follow the performance of the day. Perhaps she sensed the pressure as she messed around at the beginning of the walk not settling at all. Then suddenly she stopped and had a busy on the pavement. Slightly stunned by this, as Calvin is clean on walks my estimation of her plummeted rapidly. When I look back I probably judged her quite harshly. It must be confusing and stressful for all potential Guide Dogs at times as they have so many changes in their early years. Once Quinka got the busy out of the way she actually did some really great work. Her speed may have been close to Major’s as well.
All in all it was a thoroughly enjoyable and thought provoking day. It was useful walking different dogs and made me realise that gender, size and breed are far from important attributes. What is key is having a dog that can work well with me. Although having a dog that can walk at Calvin’s speed would be adequate, the prospect of being able to navigate places even faster fills me with excitement. I have always been under the impression that Calvin will be jealous of a new dog, yet now I believe he will love having a new playmate.
The assessment day has made me more optimistic about getting a new Guide Dog. Whichever people are matched with Vicky, Holly, Major and Quinka are all going to be given the gift of independence. A recent email from Guide Dogs informed me that I won’t be matched before the year is out. This means that I will have to wait longer for dog NO.2 than I did for Calvin and there is a strong possibility that there will be a time where I will be left without a working dog. It is disappointing news, but I have to remind myself that owning a Guide Dog is a privilege and not a right. I have to trust the process.
I have kept it no secret that I have been dreading the day Calvin has to retire. However, my perspective on that has changed somewhat recently. Last month I was invited to an assessment day at Guide Dogs with 5 others who have also been waiting a long time for a new dog. I was surprised and a little embarrassed to be the only one still working a dog.
At the start of the day we were advised that nobody would be matched that day, but the potential Guide Dogs would be ready for training around November. Some of us walked the same dogs and not everyone walked the same amount of dogs. I walked 4 lovely canines.
First up was Vicky, a pure retriever. She was such a calm sole. She walked at a similar pace to Calvin and didn’t seem to put a paw wrong. It was a bit of a novelty walking with a dog that didn’t appear to get distracted. Whilst walking with her I was told she wasn’t a fan of buses, was quite submissive and spent on gravel. Ideally I would like a dog that could spend on concrete. I’m no expert, but I can see her being matched to a nice old lady or gentleman. Her characteristics just didn’t seem to fit my lifestyle. Nevertheless I was impressed with her work ethic.
Next up was Holly, a tiny pure black Labrador. Now, if you asked me what kind of dog I would like next I would have told you I want another male giant. Holly dispelled all of my previous desires. I absolutely fell in love with her instantly. She oozed personality and I could see Calvin adoring her and she him. Again she walked at a similar speed to Calvin and also worked more like him too. She has had some inconsistency with trainers and so wasn’t the cleanest of workers. I was told her training might be extended because of this. I enjoyed the wild walk, it was just what I was used to. If I could I would have taken her home there and then. She has the potential to become a great Guide Dog and even better she spends on concrete.
After being sold by Holly, I thought there was no way another dog could top her. Then I met Major, a yellow Labrador cross retriever. Again if you asked me what kind of dog I want next, I would have said one that isn’t similar to Calvin. In my bias opinion Calvin is the world’s best dog, so why wouldn’t I want another? Major came over all waggy tailed and straight away picked up a stick off of the pavement. Smaller in stature to Calvin, I immediately nicknamed him MC, mini Calvin. Won over by his personality, I was then wowed by his work. Calvin and I get to places in good time, we stride out down the street. I have never thought Calvin is too slow. Calvin gives me everything I want from a Guide Dog. I have never wished for more. Major gave me a taste of what I am missing out on. The ability to not stride, but sprint through the streets. The feeling was truly euphoric as he whizzed through Leamington town centre, slowing where necessary. Major was majorly awesome. I don’t know what he spends on. In a way I don’t even care. A dog that can work like that is worth a compromise on something like spending.
Finally, poor Quinka, another yellow Labrador cross retriever (darker than Calvin and Major) had to follow the performance of the day. Perhaps she sensed the pressure as she messed around at the beginning of the walk not settling at all. Then suddenly she stopped and had a busy on the pavement. Slightly stunned by this, as Calvin is clean on walks my estimation of her plummeted rapidly. When I look back I probably judged her quite harshly. It must be confusing and stressful for all potential Guide Dogs at times as they have so many changes in their early years. Once Quinka got the busy out of the way she actually did some really great work. Her speed may have been close to Major’s as well.
All in all it was a thoroughly enjoyable and thought provoking day. It was useful walking different dogs and made me realise that gender, size and breed are far from important attributes. What is key is having a dog that can work well with me. Although having a dog that can walk at Calvin’s speed would be adequate, the prospect of being able to navigate places even faster fills me with excitement. I have always been under the impression that Calvin will be jealous of a new dog, yet now I believe he will love having a new playmate.
The assessment day has made me more optimistic about getting a new Guide Dog. Whichever people are matched with Vicky, Holly, Major and Quinka are all going to be given the gift of independence. A recent email from Guide Dogs informed me that I won’t be matched before the year is out. This means that I will have to wait longer for dog NO.2 than I did for Calvin and there is a strong possibility that there will be a time where I will be left without a working dog. It is disappointing news, but I have to remind myself that owning a Guide Dog is a privilege and not a right. I have to trust the process.
Wednesday 18 September 2019
Alpaca Adventures
It’s that time again where I reprimand myself for not blogging enough and promise myself I will find the hours to blog more in future. There’s so much I want to get down so I can look back and appreciate the memories in years to come.
A couple of months ago I turned thirty-one. The build up to turning thirty seemed to go on forever yet suddenly thirty is already history. I always wondered when I would feel like a grown-up and I think thirty-one is the age. I don’t know how to explain it, I feel I hold myself slightly differently now. I feel more mature and dare I say wise. Saying all of that this year for my birthday I spent it feeding baby alpacas, hardly the most adult thing to do in the world, but it was a fabulous experience.
The more birthdays you have, the harder it gets deciding what to do. Then when you are visually impaired certain activities are ruled out like escape rooms, laser quest, go carting and paintballing for their lack of accessibility. I would love to try them all if I could. Going out for meals and to the cinema is nice, but they don’t always feel special. Deciding to feed baby alpacas was very last minute and something I thought the other half would enjoy as he is a massive animal lover. I didn’t think of myself so much. It would just give me something a bit different to do on my birthday.
There has been a lot in the press in recent months about the interaction between humans and wild animals. Swimming with dolphins, riding elephants and stroking lions are becoming frowned upon, as we are becoming more aware of the cruelty behind the scenes or the impact it has on their natural state. I don’t know if feeding baby alpacas is deemed ethical. However, I went to a lovely alpaca farm where the animals seemed to be well taken care of.
I have to stress I keep writing baby alpacas as it is quite significant. I didn’t sign up to feed adult alpacas, I was going to feed baby alpacas. Before the experience started we had a little health and safety brief as we would be entering the alpaca enclosure. They explained how to approach, feed and respect them. I asked my boyfriend how big a new born alpaca was and he told me they were knee height. You can picture my surprise then when we entered the enclosure and one casually nudged me on the shoulder! Apparently baby alpacas grow up super-fast. They were definitely all at least five foot in height and before anyone panics, the mums were in the enclosure too.
I like to put myself in situations outside of my comfort zone even if it means I am scared silly. So yes after learning how big baby alpacas actually are, I spent quite a lot of time gasping and generally being a wimp. Nevertheless, I did put my big girl knickers on and gradually relaxed. The animals were friendly in nature and eagerly ate the food from your hand. Their fur was extremely soft to the touch, a texture so unique.
I can’t recall seeing an alpaca when I had useful vision. Having the opportunity to interact with them allowed me to create an image in my mind’s eye, one I never would have truly got if someone was simply describing. Whilst I wouldn’t recommend all animal experiences for ethical reasons, if you are visually impaired and you get the chance to get up close and personal with an animal, go for it, enjoy it and treasure it.
A couple of months ago I turned thirty-one. The build up to turning thirty seemed to go on forever yet suddenly thirty is already history. I always wondered when I would feel like a grown-up and I think thirty-one is the age. I don’t know how to explain it, I feel I hold myself slightly differently now. I feel more mature and dare I say wise. Saying all of that this year for my birthday I spent it feeding baby alpacas, hardly the most adult thing to do in the world, but it was a fabulous experience.
The more birthdays you have, the harder it gets deciding what to do. Then when you are visually impaired certain activities are ruled out like escape rooms, laser quest, go carting and paintballing for their lack of accessibility. I would love to try them all if I could. Going out for meals and to the cinema is nice, but they don’t always feel special. Deciding to feed baby alpacas was very last minute and something I thought the other half would enjoy as he is a massive animal lover. I didn’t think of myself so much. It would just give me something a bit different to do on my birthday.
There has been a lot in the press in recent months about the interaction between humans and wild animals. Swimming with dolphins, riding elephants and stroking lions are becoming frowned upon, as we are becoming more aware of the cruelty behind the scenes or the impact it has on their natural state. I don’t know if feeding baby alpacas is deemed ethical. However, I went to a lovely alpaca farm where the animals seemed to be well taken care of.
I have to stress I keep writing baby alpacas as it is quite significant. I didn’t sign up to feed adult alpacas, I was going to feed baby alpacas. Before the experience started we had a little health and safety brief as we would be entering the alpaca enclosure. They explained how to approach, feed and respect them. I asked my boyfriend how big a new born alpaca was and he told me they were knee height. You can picture my surprise then when we entered the enclosure and one casually nudged me on the shoulder! Apparently baby alpacas grow up super-fast. They were definitely all at least five foot in height and before anyone panics, the mums were in the enclosure too.
I like to put myself in situations outside of my comfort zone even if it means I am scared silly. So yes after learning how big baby alpacas actually are, I spent quite a lot of time gasping and generally being a wimp. Nevertheless, I did put my big girl knickers on and gradually relaxed. The animals were friendly in nature and eagerly ate the food from your hand. Their fur was extremely soft to the touch, a texture so unique.
I can’t recall seeing an alpaca when I had useful vision. Having the opportunity to interact with them allowed me to create an image in my mind’s eye, one I never would have truly got if someone was simply describing. Whilst I wouldn’t recommend all animal experiences for ethical reasons, if you are visually impaired and you get the chance to get up close and personal with an animal, go for it, enjoy it and treasure it.
Friday 9 August 2019
Support Selina To Save Sound
Fundraising. It is such a challenging task. There are so many worthy causes out there and so many charities seeking donations. In an ideal world we would donate to every charity if we could. I always try and give a few pounds here and there. I like the feeling that it gives me. The feeling that I am making a difference all be it small. Giving to charities definitely feels easier than requesting donations. Yet this is what I am here to do because the cause is something so personal and possibly life changing for me and my family.
Norrie Disease. It has stolen my vision and is threatening to steal my hearing too. It has stolen my brother’s vision, given him profound learning difficulties and also threatens to steal his hearing as well. It has also affected two of my uncles. One unfortunately passed away before I was born. He was blind and had profound learning difficulties like my brother and an epileptic fit (another symptom of Norrie Disease) took his life in his early twenties. My other uncle had his sight stolen at birth and Norrie Disease has already stripped him of his hearing. In short Norrie Disease has wreaked havoc on my family.
The cruel fact of the matter is that there is no cure for Norrie Disease. However, there is a glimmer of hope if the Norrie Disease Foundation can raise £62500 by February 2020. Please read on to find out more and how you can help.
Imagine A World Without Sight. Now imagine it without sound too. This is the reality facing people like me with Norrie disease.
Norrie disease is an ultra-rare genetic condition causing blindness/severe visual impairment from birth and deafness which can start in early childhood. In addition to this some also have issues with cognitive development.
There is currently no cure for Norrie disease.
There are around 40 known cases of Norrie disease in the UK and 500 globally; however we expect there are more families affected by this condition currently undiagnosed. Research into Norrie disease is severely underfunded and the current research looking into treating the hearing loss finishes in September 2020. If this research is not continued then children and families with Norrie disease have no hope in finding a cure before they lose their hearing as well. The progressive hearing loss is one of the most devastating symptoms of Norrie disease and we desperately need to continue this research but we need your help to do so.
The NDF was created in 2017 to respond to an acute need – to provide a support network, accurate info for families and professionals, and now, new research into Norrie Disease. The NDF is run solely by volunteers.
The Norrie Disease Foundation’s Vision is
To find a cure for Norrie disease hearing loss and to ensure the community has the support they need to live the lives they deserve.
Blind children with Norrie will go deaf too unless we fund further research now! Please help!
Thanks to Sparks and GOSHCC we have a chance to change this if we can raise £62500 by February 2020 to move forwards with pioneering research into stopping the hearing loss. Research into Norrie disease has already made a difference but the only way we can get more answers and results is to get more research done. Please join us on our journey of finding a cure - every single step is important.
This research has the potential to completely change the lives of those living with the condition - being able to identify why the hearing loss occurs, and when and what treatment to either halt or prevent the hearing loss is of huge importance to the Norrie community. Sound is incredibly important to those with visual impairment, so developing an additional sensory loss in late childhood/early adulthood is particularly hard for the individual. It is anticipated that the findings from the successful project would be adaptable to other relatable deaf/blind research projects.
If we don't raise a minimum of £62500 by February 2020 we can't stop our blind community becoming deaf too - please help us change this. A few ways you can help are outlined below-
Jeans for Genes
It would mean the world if you could get your child’s school, workplace or community group to sign up and hold a Jeans for Genes day between Monday 16 and Friday 20 September 2019. I am happy to go into your child’s school (within Leicestershire) with Guide Dog Calvin if they do sign up. All funds raised will go towards the research project. Feel free to pass my email address: selinalitt@googlemail.com to any schools. You can send photos of your Jeans for Genes day to me and we will post them across our social media. It is REALLY important when signing up that you select the Norrie Disease Foundation otherwise we won’t receive the donations. You can sign up here.
Face Book
Why not hold a fundraiser on Face Book in aid of the Norrie Disease Foundation when your birthday comes around. It is so simple to set up. Face Book will suggest setting up a fundraiser a week before your birthday. I did one this year and was delighted to raise £200 for the NDF. A massive thanks to my friends and family. Just one little thing to note, the search box is a bit silly so make sure you type ‘The Norrie’ in the edit area, as typing ‘Norrie’ doesn’t bring up the NDF for some unknown reason!
Amazon Smile
The next time you shop on Amazon instead of going through the main site go through Amazon Smile and select the Norrie Disease Foundation as your chosen charity. Amazon will then donate a small percentage to the NDF.
Run or Ride
Why not take a look at the running and cycling events the NDF has secured charity places for on their website. If you already have a place in an event you can still raise funds for the NDF, just let them know and you will be supported all the way.
DIY
Alternatively, you could create your own fundraiser. Perhaps a quiz or curry night? Football or tennis tournament? Fun day or music concert? Whatever it might be get in touch with the NDF and they will be more than happy to provide flyers advertising your event.
Just Donate
Finally, if you are feeling generous and would like to just donate a few pounds then that would be amazing. I have set up a fundraising page exactly for that purpose. You can visit it here Support Selina To Save Sound.
The NDF is such a small community with a tall target to reach. Every donation will be so gratefully received.
THANK YOU
Norrie Disease. It has stolen my vision and is threatening to steal my hearing too. It has stolen my brother’s vision, given him profound learning difficulties and also threatens to steal his hearing as well. It has also affected two of my uncles. One unfortunately passed away before I was born. He was blind and had profound learning difficulties like my brother and an epileptic fit (another symptom of Norrie Disease) took his life in his early twenties. My other uncle had his sight stolen at birth and Norrie Disease has already stripped him of his hearing. In short Norrie Disease has wreaked havoc on my family.
The cruel fact of the matter is that there is no cure for Norrie Disease. However, there is a glimmer of hope if the Norrie Disease Foundation can raise £62500 by February 2020. Please read on to find out more and how you can help.
Imagine A World Without Sight. Now imagine it without sound too. This is the reality facing people like me with Norrie disease.
Norrie disease is an ultra-rare genetic condition causing blindness/severe visual impairment from birth and deafness which can start in early childhood. In addition to this some also have issues with cognitive development.
There is currently no cure for Norrie disease.
There are around 40 known cases of Norrie disease in the UK and 500 globally; however we expect there are more families affected by this condition currently undiagnosed. Research into Norrie disease is severely underfunded and the current research looking into treating the hearing loss finishes in September 2020. If this research is not continued then children and families with Norrie disease have no hope in finding a cure before they lose their hearing as well. The progressive hearing loss is one of the most devastating symptoms of Norrie disease and we desperately need to continue this research but we need your help to do so.
The NDF was created in 2017 to respond to an acute need – to provide a support network, accurate info for families and professionals, and now, new research into Norrie Disease. The NDF is run solely by volunteers.
The Norrie Disease Foundation’s Vision is
To find a cure for Norrie disease hearing loss and to ensure the community has the support they need to live the lives they deserve.
Blind children with Norrie will go deaf too unless we fund further research now! Please help!
Thanks to Sparks and GOSHCC we have a chance to change this if we can raise £62500 by February 2020 to move forwards with pioneering research into stopping the hearing loss. Research into Norrie disease has already made a difference but the only way we can get more answers and results is to get more research done. Please join us on our journey of finding a cure - every single step is important.
This research has the potential to completely change the lives of those living with the condition - being able to identify why the hearing loss occurs, and when and what treatment to either halt or prevent the hearing loss is of huge importance to the Norrie community. Sound is incredibly important to those with visual impairment, so developing an additional sensory loss in late childhood/early adulthood is particularly hard for the individual. It is anticipated that the findings from the successful project would be adaptable to other relatable deaf/blind research projects.
If we don't raise a minimum of £62500 by February 2020 we can't stop our blind community becoming deaf too - please help us change this. A few ways you can help are outlined below-
Jeans for Genes
It would mean the world if you could get your child’s school, workplace or community group to sign up and hold a Jeans for Genes day between Monday 16 and Friday 20 September 2019. I am happy to go into your child’s school (within Leicestershire) with Guide Dog Calvin if they do sign up. All funds raised will go towards the research project. Feel free to pass my email address: selinalitt@googlemail.com to any schools. You can send photos of your Jeans for Genes day to me and we will post them across our social media. It is REALLY important when signing up that you select the Norrie Disease Foundation otherwise we won’t receive the donations. You can sign up here.
Face Book
Why not hold a fundraiser on Face Book in aid of the Norrie Disease Foundation when your birthday comes around. It is so simple to set up. Face Book will suggest setting up a fundraiser a week before your birthday. I did one this year and was delighted to raise £200 for the NDF. A massive thanks to my friends and family. Just one little thing to note, the search box is a bit silly so make sure you type ‘The Norrie’ in the edit area, as typing ‘Norrie’ doesn’t bring up the NDF for some unknown reason!
Amazon Smile
The next time you shop on Amazon instead of going through the main site go through Amazon Smile and select the Norrie Disease Foundation as your chosen charity. Amazon will then donate a small percentage to the NDF.
Run or Ride
Why not take a look at the running and cycling events the NDF has secured charity places for on their website. If you already have a place in an event you can still raise funds for the NDF, just let them know and you will be supported all the way.
DIY
Alternatively, you could create your own fundraiser. Perhaps a quiz or curry night? Football or tennis tournament? Fun day or music concert? Whatever it might be get in touch with the NDF and they will be more than happy to provide flyers advertising your event.
Just Donate
Finally, if you are feeling generous and would like to just donate a few pounds then that would be amazing. I have set up a fundraising page exactly for that purpose. You can visit it here Support Selina To Save Sound.
The NDF is such a small community with a tall target to reach. Every donation will be so gratefully received.
THANK YOU
Saturday 8 June 2019
Life Update
Finally I have found the time to sit down and write. I am not a fast writer so I like to have a couple of spare hours free when I decide to blog.
This post isn’t going to be interesting to most, but it is important for me to document the last few months of my life.
Let’s start with my knee surgery on 28 February. My consultant micro fractured the section of my knee that I injured, which has hopefully encouraged scar tissue to act like cartilage in that area. There was also a loose bone fragment that was removed and I expect was one of the reasons I was experiencing a lot of pain pre-surgery. I was on two crutches for four weeks and then down to a single crutch for a further two weeks. Surprisingly, I didn’t need to take any pain killers whatsoever post-surgery. I keep asking myself what is worse, super painful eye surgery where you suffer for a week or painless knee surgery where the recovery takes months. I still haven’t decided!
Guide Dog Calvin ensured I smiled whilst I was on crutches as he insisted on going behind me and pushing me along with his head. It reminded me of a parent elephant helping its young along. I love that he still finds new ways of amusing me. He turned 11 in March and is still working. His workload is very light mind as I have found it a challenge to walk relatively pain free at his pace, which is akin to a brisk walk. This afternoon was probably the first time I felt comfortable throughout our walk. It was only 25 minutes, but I can begin to start looking at increasing the distance.
I can’t say I am enjoying the rehabilitation of my knee. However, it was a relief to start doing pool sessions and getting back into the gym. I am a long way off from attempting to run again, but I should start putting some weights back through my legs in the near future. On a daily basis I am not yet better off than I was pre-surgery. I still have times where the joint aches and catches. I am also yet to get full mobility back, as I am not able to kneel. I know I have to play the long game.
On a positive note, work has been nice and busy. I am on a 0 hour contract so there can be months where I don’t work at all. Lately it has been nearly every week and is providing an ideal distraction from the lack of athletics training.
Another good distraction was my recent holiday to Mallorca with the boyfriend. We only went for 4 nights, the weather was mixed and I was ill with a cold for the majority of it, but it was great to get away and spend quality time with each other. Long distance relationships are tough.
I turn 31 next month. It doesn’t feel nearly as daunting as turning 30 was. I must make plans to celebrate. Hopefully I won’t leave it so long before my next blog post.
This post isn’t going to be interesting to most, but it is important for me to document the last few months of my life.
Let’s start with my knee surgery on 28 February. My consultant micro fractured the section of my knee that I injured, which has hopefully encouraged scar tissue to act like cartilage in that area. There was also a loose bone fragment that was removed and I expect was one of the reasons I was experiencing a lot of pain pre-surgery. I was on two crutches for four weeks and then down to a single crutch for a further two weeks. Surprisingly, I didn’t need to take any pain killers whatsoever post-surgery. I keep asking myself what is worse, super painful eye surgery where you suffer for a week or painless knee surgery where the recovery takes months. I still haven’t decided!
Guide Dog Calvin ensured I smiled whilst I was on crutches as he insisted on going behind me and pushing me along with his head. It reminded me of a parent elephant helping its young along. I love that he still finds new ways of amusing me. He turned 11 in March and is still working. His workload is very light mind as I have found it a challenge to walk relatively pain free at his pace, which is akin to a brisk walk. This afternoon was probably the first time I felt comfortable throughout our walk. It was only 25 minutes, but I can begin to start looking at increasing the distance.
I can’t say I am enjoying the rehabilitation of my knee. However, it was a relief to start doing pool sessions and getting back into the gym. I am a long way off from attempting to run again, but I should start putting some weights back through my legs in the near future. On a daily basis I am not yet better off than I was pre-surgery. I still have times where the joint aches and catches. I am also yet to get full mobility back, as I am not able to kneel. I know I have to play the long game.
On a positive note, work has been nice and busy. I am on a 0 hour contract so there can be months where I don’t work at all. Lately it has been nearly every week and is providing an ideal distraction from the lack of athletics training.
Another good distraction was my recent holiday to Mallorca with the boyfriend. We only went for 4 nights, the weather was mixed and I was ill with a cold for the majority of it, but it was great to get away and spend quality time with each other. Long distance relationships are tough.
I turn 31 next month. It doesn’t feel nearly as daunting as turning 30 was. I must make plans to celebrate. Hopefully I won’t leave it so long before my next blog post.
Thursday 14 February 2019
Fractured Dreams
Let’s pretend it is the end of 2018 for a few minutes. Life has been mind boggling lately meaning that I haven’t been in the right mood to write.
Last year was a mixed bag. An operation each for Calvin and I, lots of illnesses for me, the continued rehabilitation of my knee and three holidays to Paris, Amsterdam and Mallorca. Turning 30 was depressing, but I think I am over that one now. There were some constants with my relationship, job and volunteering at Brownies. I nearly moved house then thought better of it. Nothing amazing happened in 2018 and thankfully nothing too awful either.
Moving on to 2019. I thought this would be the year that I would be competing again. It has been 19 months since I fractured my knee warming up for a race. Rehabilitation was tough mentally and physically, but I was seeing progress. Last summer I moved from running on grass to the track and towards the end of the year I was even trying out blocks again. However, my knee has never been totally pain free and the flair ups started happening more often even when the intensity of training wasn’t increasing. I hit a brick wall. I was regularly getting sharp pains when I ran. At a loss with what to do next I decided to get referred back to a consultant and had an MRI scan a couple of weeks ago.
The results were heart-breaking. The fracture called an osteochondral hasn’t healed. Not only that I have now developed early-onset arthritis in that knee. The consultant told me that there comes a time in our lives where we have to make decisions. He told me to stop running.
It is no secret that athletics is my life. Since childhood I have been addicted to the sport. I have been nothing but dedicated when I decided to try and make it as a world class athlete. It has helped me massively to come to terms with my sight loss. Athletics has given me a purpose. I never expected to run forever, but I did expect to leave the sport on my own terms. I haven’t achieved everything I feel I am capable of yet. Prior to my injury I was running faster than I have ever done before. I still have dreams of going to a European Championships and breaking the 13 second barrier for 100m. Going blind was difficult and although some might not understand, the news that I may never run again is just as hard to take.
Unfortunately, my injury can’t be fixed. However, there is a possibility that my symptoms can be improved with surgery. I understand there are no guarantees and my consultant strongly believes even with surgery that I should no longer run.
Surgery is booked for 28 February and I will be on crutches for 3 weeks, which will be a challenge in itself. Then I need to go through the process of rehabilitation again. At the moment I haven’t given up on running. It could be argued that I am in denial. I am just not ready to give up on my dreams. I could switch sports, but athletics is my one true love.
Away from my knee, 2019 is going to be testing generally. I am a few weeks away from being on the Guide Dog waiting list for a year. Calvin’s retirement looms ever closer with his 11th birthday taking place next month. I am not liking not being in control of things lately. My future feels so uncertain.
I deeply hope that when I’m writing my review of 2019 that I will be feeling very smug. Fingers crossed that I can defy the odds and get back to sprinting relatively pain free and that Calvin will be happy with retirement.
We can’t always choose what happens to us, but we can choose how we respond…
Last year was a mixed bag. An operation each for Calvin and I, lots of illnesses for me, the continued rehabilitation of my knee and three holidays to Paris, Amsterdam and Mallorca. Turning 30 was depressing, but I think I am over that one now. There were some constants with my relationship, job and volunteering at Brownies. I nearly moved house then thought better of it. Nothing amazing happened in 2018 and thankfully nothing too awful either.
Moving on to 2019. I thought this would be the year that I would be competing again. It has been 19 months since I fractured my knee warming up for a race. Rehabilitation was tough mentally and physically, but I was seeing progress. Last summer I moved from running on grass to the track and towards the end of the year I was even trying out blocks again. However, my knee has never been totally pain free and the flair ups started happening more often even when the intensity of training wasn’t increasing. I hit a brick wall. I was regularly getting sharp pains when I ran. At a loss with what to do next I decided to get referred back to a consultant and had an MRI scan a couple of weeks ago.
The results were heart-breaking. The fracture called an osteochondral hasn’t healed. Not only that I have now developed early-onset arthritis in that knee. The consultant told me that there comes a time in our lives where we have to make decisions. He told me to stop running.
It is no secret that athletics is my life. Since childhood I have been addicted to the sport. I have been nothing but dedicated when I decided to try and make it as a world class athlete. It has helped me massively to come to terms with my sight loss. Athletics has given me a purpose. I never expected to run forever, but I did expect to leave the sport on my own terms. I haven’t achieved everything I feel I am capable of yet. Prior to my injury I was running faster than I have ever done before. I still have dreams of going to a European Championships and breaking the 13 second barrier for 100m. Going blind was difficult and although some might not understand, the news that I may never run again is just as hard to take.
Unfortunately, my injury can’t be fixed. However, there is a possibility that my symptoms can be improved with surgery. I understand there are no guarantees and my consultant strongly believes even with surgery that I should no longer run.
Surgery is booked for 28 February and I will be on crutches for 3 weeks, which will be a challenge in itself. Then I need to go through the process of rehabilitation again. At the moment I haven’t given up on running. It could be argued that I am in denial. I am just not ready to give up on my dreams. I could switch sports, but athletics is my one true love.
Away from my knee, 2019 is going to be testing generally. I am a few weeks away from being on the Guide Dog waiting list for a year. Calvin’s retirement looms ever closer with his 11th birthday taking place next month. I am not liking not being in control of things lately. My future feels so uncertain.
I deeply hope that when I’m writing my review of 2019 that I will be feeling very smug. Fingers crossed that I can defy the odds and get back to sprinting relatively pain free and that Calvin will be happy with retirement.
We can’t always choose what happens to us, but we can choose how we respond…
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