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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......


The Beginning

As anyone who suffers with Ushers will know it is a trying disease which has a profound effect on not only the sufferer but those around them. All too often this is the frightened parents coping with the prospect of watching the child they love struggling to cope with a world that doesn’t really know or understand their illness. It is the children who have to realise that their Mum or Dad are “different” and can’t see them grow up or hear their words. There is one group however that very few people mention or consider and that is the partner of an Usher sufferer.

These people share the hardships of life not through having to because of hereditary but through love and caring. These people feel the pain of the sufferer but also feel their own pain. These people fight each day to survive for themselves and their partner. I know I am one of them.

I think to understand my life you need to know the full story. It may take a while so sit down and make yourself comfortable.

It all started one beautiful August afternoon (13/8/1991 at 2 pm to be precise). I was being a Good Samaritan and helping a teacher find the area office. There I saw a beautiful lady in a flowery sundress that captured my heart immediately. To look at her you would never know she has Usher’s and if her colleague (a mutual friend) hadn’t said I wouldn’t know of her disability. The next day I telephoned her and arranged a date. She was very open about her condition although at this point we didn’t call it Usher’s but RP.

I quickly fell in love with this beautiful lady and it wasn’t long before we started dating. I guess I realised the true extent of her illness till we had been going out a fortnight. She came to stay over and we went to the pub for the evening. As it was summer we left in bright sunshine and everything was easy. By the time closing time came it was dark. We walked home and Nicole clung on for dear life. In fact her grip was so tight it hurt and she stumbled a few times. Being a new relationship and a gentleman I didn’t say anything until we got home and asked if she was ok. She explained that she couldn’t really see anything during the walk. It didn’t change the way I felt about her but it made me think.

I took my wife to meet the parents and the rest of my family (I lived away) the following week. They fell in love with her instantly but didn’t fully understand her illness until darkness fell. They lived in a flat which had dark outside stairs. We had to climb them followed by my mum and dad and brother. As we climbed I told her “step, step, step, level”. Later my brother asked what the instructions were for so we explained. Still we didn’t know about Ushers..we thought she just had RP!!

Our love grew and a year later we married. I loved her with all my heart just as I do now but neither of us knew what lay ahead of us. We struggled to start a family and had IVF. We never thought it the day would come but the little blue line finally materialised. We headed to the docs for confirmation. At the end of the joyful visit the doctor asked Nicole “so what is Ushers Syndrome?” We looked non- plus at each other as this was the first time we had really heard of it. The doctor just shrugged and told us not to worry about it until after the baby was born.

Nicole had a real hard pregnancy. High blood pressure and pre-eclampsia prevailed throughout and I nearly lost her on the operating table but we came through and we had our first daughter. A few weeks later we went back to the doctors as we wanted to know about how Nicole’s disease would affect our new baby. The doctor sent us to a genetic counselling. It was at this meeting that our world started to fall apart. I will tell more in part 2 of my story