My son has Coats' Disease
This interview features a dad talking about his experience of having a young son with Coat’s disease. He discusses diagnosis, his emotions and the effect on family life.
My child has Diamond Blackfan Anaemia
"When I first discovered my daughter had a rare disorder, Diamond Blackfan Anaemia (DBA), my wife was in utter shock. I, however, felt relieved. For the previous nine months she was very ill, with doctors fobbing us off and me feeling powerless to do anything. Now, I thought, there is a name to it; then there would be a process to follow and some sort of resolution. How wrong I was!
For the past four years since that day, I have felt utterly useless. Although I have greedily consumed every piece of information there is about DBA, becoming a genetics and haematology expert in the process, I look back and see no progress. Even though I have helped set up a parent support group, registered as a charity and spend hours each week trying to find answers, there is no resolution. Each day my daughter doesn't get any better and each day I chide myself for not doing enough to make it better.
Two years ago, we had another child, a son. The decision to have another baby was difficult. DBA is genetic, but there are no definitive genetic markers, so no genetic counselling is available. Secondly, with no family history of the condition, the chances of having a second child with DBA were unlikely. All my life I have felt jinxed. But this time, it threw me sideways.
Henry having DBA is, to me, a chance we took, but with his life as the wager. With Alexandra, I feel helpless: with Henry, I feel guilty. My children are an absolute treasure to me. I take nothing for granted. I have no ambition for them, except for them to be happy. That doesn't stop them from being the best in the class, superb artists, or being the best comedians of their time. One day, when this is all over, they'll probably tell me off for taking it all too seriously." Dominic Messenger
Both my boys have special needs
"I am a single father with three children. Two boys, aged seven and nine, and a girl of five. I had to give up my business about three years ago when I split up with my wife, to look after the children. Both boys have special needs; the younger has Asperger syndrome, ADHD and a sleeping disorder. The older one has yet to be diagnosed.
Being a single father, the problems I run into are numerous as people do not associate fathers as being the lone parents. I did go to a carers group for a while but it was all women who, while they tried to be polite, didn't believe that a single man could look after three kids on his own without any help. So I stopped going, as it didn't help me at all.
The benefit system has been a nightmare, as I didn't know anything about it. I could find no one to help me with it so I have found that getting the correct benefits is still difficult. I find that the local housing department can help fill in forms and I have used them on several occasions lately and they have helped greatly.
I have no family except a brother whom, for his own reasons, cannot help me very much with the kids. Social Services have completely ignored all requests for help and advice, both from me and other professional bodies. Getting the proper education for my kids is also frustrating as I have had to take the LEA to a tribunal to get a special school specified for my son. They ordered a special school but I find that every one in the area is full. So I am still fighting the LEA to get him a suitable school.
When I take the kids out to places like Alton Towers, it is impossible to go on any rides the oldest one wants to, as there is no one to watch the other kids. So I spend the day trying to get the kids on rides one or two at a time and with a child with ADHD that is not easy.
I can't have a social life as I can't go out without the kids. The local people took a long time to understand that my boys were not naughty but don't understand that what they do is wrong. But now my neighbours understand and accept them. I struggle to keep the house in order but I do it. I hope this gives you an insight into problems of being a single father of children with special needs." H Foster
Ben has Morquio's disease
"I made an effort to avoid contact with support groups. They were for people that needed support and I certainly didn't. I was facing up to things and planning for the future. I was being sensible and logical... and miserable. I didn't feel sorry for myself and nor did I once think "why me?" so therefore I was coping. I flew a banner that stated that 'Ben's attitude to his disease would be a reflection of mine' so I made sure that my attitude was positive. On the inside I was contorted with grief.
Ben grew. He didn't grow quickly but he grew. He carried on walking. He didn't walk very quickly but he walked. He played football, swam, canoed and rode his bike. He talked, and my word he talked. I never expected so many questions. His wit and intelligence amazed me. His reaction to his now obvious set of disabilities made me burn with pride. I had never figured that Ben would appear to be facing his 'problem' so positively. I was also acutely aware that my grief was based on how I imagined Ben would feel about this disease, and in reality there was no way that I could foresee how he would feel. With Ben feeling positive we could all feel positive.
I plucked up the courage and decided to attend a Conference. Yes we had heard of the Conference and even seen the photographs but have never wanted to go. I really didn't want Ben to see how things might turn out. I didn't want to see how things might turn out. I did however, want to see how research into the control of the disease might be progressing.
We met other people with Morquio's disease; we met people with all manner of MPS diseases. We met parents and carers. We met specialists. In speaking to people we found support. I found support and only then realised we had always needed it. Not in any cathartic way, just to know we weren't alone. And we weren't. We found hope. We found inspiration.
Ben has Morquio's disease. That's the way it is. He has a disease. A disease that at the moment is incurable. We are a family. We are not your usual family. One of our three boys has Morquio's disease. There is nothing that we can do about it so we mustn't let it eat us up. We can however, learn to live with it. It is not always negative.
We have all come to know Morquio's disease, but none more closely than Ben. He amazes me and I love him deeply. I will always look up to him." Howard Davies
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