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Sunday, 09 November 2014 00:00

Dad's First Blog

Well it's high time I tried to put down how I feel about Molly Jane Watt.
I wear the badge with pride which says I've unconditional love for all of our children. Harry was born 26 years ago. Life changed very much once we became parents. Start of unconditional love. Jack born 22 years ago; then the delight of our first girl (Molly). She used to blow raspberries and we didn't realise for sometime that this was because she couldn't hear us so the vibration of these noises were her trying to communicate. She was diagnosed as severely deaf at 18 months.
Jane was devastated and typical of me it "was fine we will deal with it." I actually feel quite guilty that I didn't take this condition anywhere near as seriously as Jane.
I've always tried to find the positive wherever I can. Looking back I feel bad that I didn't support Jane as much as I should have. Of course the past has happened so we can't change it.
That devastating blow to our beautiful little girl changed the whole dynamic of ours lives as we became involved in South East Berks Deaf Children Society. We shook our cans outside shops for any pennies we could get. Early lesson in life. The ones who looked like they'd pop a few pennies in to our cans would cross the street whereas a scruffy looking person would put a fiver in. Very interesting. Fundraising became something we really got into.
Lily came along to complete our wonderful family, 2 boys and 2 girls, perfect.
At age 12 Molly who had mastered a totally normal life with lots of friends and great social skills had an eye test and then we were hit by a proverbial sledgehammer. She was going blind. Hard to put this down in words. Imagine losing your sight and already deaf!
Sight has to be the most precious sense we have. Molly's was going and fast.
It took a little while to tell her.
When Jane told her she didn't make a big deal of it, It was as if she knew and had started to prepare for her new life in the dark!
Since the age of 12 Molly has had to endure visits to Moorfields Eye Hospital to start with every 3 months then twice a year her consultant was Prof Tony Moore along with his team, a wonderful man.
Our fundraising events were galvanised once Molly got diagnosed with Usher Syndrome. I did various challenges and have been supported by some lovely people. We calculated a year or so ago that since Molly was diagnosed deaf we've raised over £50,000 to help support people like Molly. It's a very powerful thing the gift of giving and this gives Jane and I so much pleasure. Making a difference to people with Deafblind issues is what we are all about.
Molly is one amazing young lady. I'm obviously biased but I have to say that with dozens of events we've either organised or been along to where she has spoken it's very humbling to hear and see the feedback.
I'm proud of all of our children and never favour one over the other. With Molly's issues which to this day are very challenging it has meant Jane has had to spend more time and effort with her so to speak.
Molly's best friend Unis her Guide Dog came into her life over 3 years ago and is literally her eyes and often her ears aswell. They are one great team. Molly is on an amazing journey and I've no doubt she will be famous not for any selfish reasons but simply to help others. In her young life (20 now) she's done a lot of living and I'm sure there's plenty more to come. That's it for now as I'll be doing more blogs in the coming weeks, months and years to come as Molly's amazing adventure continues......
Monday, 03 November 2014 00:00

Glendalough Trail - 1 November 2014

Well, here I am with some amazing friends and family( I'm the short one with red hair!!) getting ready to take part in my very first charity event here in Ireland to raise funds for the Fighting Blindness.ie.

It was an amazing but extremely tough challenge in the Glendalough Valley in the mountains in Co. Wicklow, especially as it was my first time partaking in such an event. Admittedly, I'm so delighted with myself for completing it and not even the sore legs can take the smile off my face. It was also a very important event for me personally, as while fundraising I decided it was time to reveal to everyone that I am losing my eyesight and that it is due to Usher Syndrome type 2. Only some of my close friends and close family knew beforehand, and even though they had given me enormous support and still continue to do so, it was time to make others aware. I wasn't diagnosed with Retintis Pigmentosa until March 2013, a few weeks before my 34th birthday. It was with complete and utter shock to learn of this diagnosis and I don't think i could ever forget that day, how could anyone really? After diagnosing me with RP, it suggested that it could be due to Usher Syndrome and I was urged to find out more about this condition. I left the ophthalmologist's office having heard his words but not comprehending what he actually meant. It was only when I got home and like everyone does, I 'Googled' it all. That's when it hit me, I'm going blind. When he spoke of my eyesight getting worse and worse but hopefully I might have good central vision for another 10/15 years, that's what he meant, I'm going blind. He talked of the possibility of gene therapy which looks promising but probably not for another 15/20 years, he meant I'm going blind and there's no cure at all. It was really difficult to believe that I was having to deal with going blind when I was already deaf. Kept thinking was this 'supposed god' having a laugh? Reading up on Usher Syndrome, I knew straightaway that it was what I had and more than likely it was type 2. It really was like reading about myself. Genetic testing later showed that I do indeed have Usher syndrome type 2 (USH2a). It was awful though, having to tell my parents that the hearing loss was in fact genetic (previously thought it was due to an infection) and that I am also going blind now. I know they did blame themselves for awhile but I'm hoping that with me being open and honest with others about it, it will show them I will be just fine. I came across Molly Watt during my first Google search on Usher Syndrome and kept thinking wow, fair play to her for all that she was achieving and not letting it hold her back. I really admired this girl and I still do!! I also came across Mark Dunning and the Usher Coalition, Megan Kennedy and many others, and the positivity and faith they had but yet being totally honest with how hard it can be was admirable. They all gave me the strength to believe that I can still achieve things in life despite it getting harder to do so. After a year and half of coming to terms with the diagnosis, I realised I didn't want to hide it anymore. I did hide my hearing impairment and I had left it to others to guess that I was so. But hiding going blind... no, that would be so draining and completely unnecessary. So I put up on Facebook the link to my fundraising page where I explained briefly what I had and how it was affecting me. It really worked out well as I had a lots of people talking about it and it really raised the profile of Usher Syndrome in my area which I'm delighted with.. Also by raising awareness of the condition I was hoping to get support and understanding in return, and that is happening. The amount of support I got was overwhelming! There is still some way to go though with raising awareness and making others understand how tough it is. But sure it's only the start of my journey with Usher and I intend to make it a posiitve one even if it does get a bit bumpy along the way.