March charity news – Action Medical Research
￼￼”Henry now has a brighter future”
Dr Caroline Johnston, 47, reveals how Action Medical Research has helped her son to live a fuller life
My son, Henry, 13, is a typical teenager in many ways. He loves being active – whether that’s running, trampolining or swimming – and he always wants to be out with his friends. However, while he likes to be independent and give everything a go, he does require more support than many boys his age.
Henry was diagnosed with Down syndrome when he was three weeks old, after he was referred for tests at the hospital due to concerns over his development. Although I had a feeling deep down that Henry might have Down syndrome, it was still a shock to be given the diagnosis and we were worried what the future might hold.
Following the diagnosis, he was given tests for heart problems and to check his bowels, hearing and eyesight. We were pleased to be told that Henry was fit and healthy, although he would take a bit longer to reach his milestones. When Henry was two years old he was prescribed glasses at one of his regular check-ups to help him focus and correct his squint. However, even with glasses we noticed that he was very cautious in unfamiliar places and, as he got older, he was having difficulties with reading and using computers.
In 2013, I attended a conference for parents and professionals on different aspects of Down syndrome. Dr Margaret Woodhouse spoke about how some children with the condition have more complicated eyesight problems than we originally thought, so even though they wear glasses it is never going to fully correct their problem. She had found that bifocal glasses can really help, which was very encouraging.
I made an appointment for Henry to have his eyes tested by Dr Woodhouse, which revealed he has a cerebral visual impairment, meaning that even with glasses things look fuzzy. We also discovered that he was only seeing with one eye at a time and couldn’t see in 3D – so he cannot judge depth as well as other people – which explained why stairs and steps have always been so challenging for him and why he struggles with things like buttons. Dr Woodhouse prescribed him bifocal lenses and the difference has been amazing. Although he still struggles with his fine motor skills, his handwriting is becoming clearer because he can see what he is writing and his reading is improving. We now have a better understanding of his problems and the support he requires. Having the right glasses will really help to improve Henry’s independence. He attends a mainstream school and wants to be like all his friends, so being able to see well enough to do things like read his timetable and do the buttons on his school shirt will really make a difference. He also has coeliac disease so needs to be able to read labels and menus to choose gluten-free foods. Henry is really ambitious and has already told us he wants to have a job when he’s older, so being able to read is very important.
I now work as a research evaluation manager for Action Medical Research. The money the charity raised in the Candis Big Give will help to fund a research study led by Dr Woodhouse into vision problems in children with Down syndrome. If these vision problems aren’t identified and corrected, there’s a danger that people think a learning disability is more severe than it is, so there are much lower expectations and children aren’t encouraged to reach their full potential.
Bifocal glasses have opened up Henry’s world properly. The research is vitally important to help ensure every child with Down syndrome has a brighter future.
Action Medical Research – THE FACTS
- Action Medical Research is a UK-wide charity funding vital research to help sick and disabled babies and children.
- Despite enormous progress in medicine, all around the UK today there are millions of sick and disabled children who need help.
- Visit action.org.uk to find out how you can support its work and help save and change children’s lives.
- Davina McCall is raising money for the charity with a bike ride on 12 June. See action.org.uk/davinas-big-sussex-bike-ride for details.
BIG GIVE UPDATE
The £34,575 raised by Action Medical Research in The Candis Big Give will help to fund research into why babies born with Down syndrome often go on to have vision problems and need glasses and to help ensure children get the right glasses they need.