Asa was born on the 2nd May 1991, and like his sister Dominique, seemed a bright bouncy baby full of life, vitality and vigour. However after only a few short weeks it became apparent that he had some form of deficiency with his eyesight, as he was unable to focus his attention on any specific object for even the shortest length of time.

As a precautionary measure he was referred to a specialist, and tragically, having undergone a series of consultations and tests at Great Ormond Street Hospital was diagnosed as suffering from a genetic disease called Neurofibromatosis 2 (NF2).
This disease affects 1 in 40,000 people and is as yet incurable and potentially life-threatening. Research is ongoing and they have isolated the faulty gene, but it is in very early stages and we all know how long these things can take. MRI scans soon detected that not only did Asa have tumours, but also optic glimoa and an acute abnormality in this left eye.
So far, Asa has had to endure a vast amount of tests for various aspects of this disease, that is constantly developing. He has had three major operations all to remove tumors, the last being in Los Angeles to remove a tumour on Asa's right hearing nerve. It was hoped that the surgeons there would be able to preserve Asa's hearing. This unfortunately was not the case and he has now lost his hearing and sight from the right side of his body.

The last couple of years leading up to this last operation were relatively good ones for Asa and his family, but he must now be very closely monitored as every decision is crucial to enable Asa to have the best quality of life possible. We intend to preserve Asa's hearing on the left side or as long as possible, which will mean future trips to Los Angeles for surgery as and when it is needed. There is currently a large tumour growing behind Asa's eyes on the Ciasm and Piturity gland, which is causing major concern amongst his team of doctors and surgeons, as this is a very complex area of the brain and has caused its own problems with Asa's sight and growth. He now has to suffer a nightly injection of growth hormone, to counteract the affects of the tumour.

This story paints a bleak picture for anyone who does not have the good fortune to have Asa as a part of their life, be it family or friends (of which he has too many to count!). But to know Asa is to love him, his energy, his love of life and his almost constant optimistic outlook on everything around him, not only his own problems but others too, is an inspiration to everyone. Asa is registered blind and currently attends full time mainstream school, with the aid of a full time assistant, and partakes in all activities he can. He is very intelligent and absolutely refuses to allow his disabilities to hinder him. He has had various hobbies over the years, which include motorbikes, as a passenger and riding them (until he drove it through his Nan's greenhouse!!!), playing the electric guitar, his Playstation 2 and James Bond (especially the gadgets) to name but a few. He recently developed a passion for trampolining, which he put to good use by raising £1,500 during the summer for his Trust Fund. this is the way Asa is, he doesn't sit back and expect people to help him, he goes out there himself and does the best he can. This is the inspiration people see when they meet him and what makes people he has never met want to help him. He is truly an amazing boy.

However, despite Asa's fortitude and resilience in battling day in and day out against such overwhelming odds, his illness will always be ongoing, progressive and unpredictable. Although he has a dedicated team of surgeons, doctors and nurses looking after him, they are 'writing the book' as they go due to the fact that Asa is very rare in that he was born with his symptoms of NF2. Sufferers do not usually display symptoms until their early teens. They are also acutely aware that Asa's condition could deteriorate at any time and leave him not only blind and deaf, but claim his life.

Naturally we all try to remain optimistic, but this becomes increasingly hard when there is always another tumour casting a dark shadow over us. Asa;s Dad (Paul) has taken a year off from work to enable him to concentrate on raising money for Asa's Trust Fund. this has included an open air concert, trekking through Peru and the Amazon amongst other things. Local people and business have been holding events and giving donation, all of which is helping to build the fund up so that whenever a situation arises, now and in the future, there will always be finds available to help him.

The one thing that remains most important, not only to Asa but his family as well, is ensuring his quality of life, whatever his disease may throw at them, and whatever the outcome of any future operations, his love of life and spirit remains intact, and he enjoys life to its full potential.