Ann is 11 years old and lives with her parents and her little brother Andy who is three. She was born without eyes and also has a type of autism and is unable to communicate verbally.
“We live near noise. When the windows are open I hear cars and people walking and talking. I need noise to know what is happening as my eyes don’t work. A long time ago I heard a doctor telling mummy about glass eyes that they could put into my eye sockets to make my face look prettier, but when the lady tried to fit them in it hurt and I screamed and screamed. Mummy and daddy don’t like it when I scream so no one tries any more to fit my glass eyes.
Some days my tummy feels really sore with a pain that will not go away. I bang my head some days when I really want to talk to mummy and daddy and little Andy but no words will come. Words will only come when I copy the songs that I learnt at school and the nursery rhymes that mummy and daddy taught me. I love music and have my own cassette player in my room. Mummy and daddy understand when I have a pain or feel unhappy and they will give me medicine and rub my pain away and read stories to me. Sometimes this happens when all the noise has stopped and I can only hear breathing. It frightens me when the noises stop and I scream until mummy and daddy come to play with me.”
The Eyeless Trust have been able to help by paying for Ann’s room to be lined with padding to prevent her hurting herself when she is head banging. We also pay for extra days for Ann in a Residential Respite Care Centre which allows her parents to have an uninterrupted night’s sleep. Like many other parents, Ann’s parents find it very helpful to be able to discuss their problems and concerns with someone who understands Ann’s conditions and the stresses and strains of caring for her. Our medical social worker remains available to discuss these problems and to help find solutions.
Hannah is twelve. She has microphthalmia and coloboma and has very limited sight. Her father left her mother when she was a baby and they live on State Benefits as her mother has to stay at home to look after Hannah.
“I did not know that I was different from other children until mum took me to a playgroup and I could feel children running past me and sometimes bumping in to me. It frightened me, so mum always stayed with me. If I hold something very close to my face I can see just see part of it out of the corner of my eye.
When I was five I went to school and had a lady there to help me but it was difficult because I could not play the same games as the other children so they did not ask me to play with them. I got very lonely and kept pretending to mum that I was not feeling well enough to go to school. Mum realised what was happening and I was transferred to a pecial unit It’s great there because all of the other children have problems like me. Besides our lessons we learn things that children with sight already know, like how to cross roads, travel on buses and go into shops. I have made a lot of friends but can only play with them in school as we have to travel miles to get there.
My school work is coming on really well now with the help of a special computer. A Social Worker from the Eyeless Trust visits our house to talk to mum about how she is managing and she talks to me about things that are happening to me. I told her about the work that I can do on a computer, so she found out what sort of special computer that I needed and the Eyeless Trust bought one for me. It’s great to have my own computer at home. I can also play games on it. It is not safe for me to go out to play with the sighted children who live near by, as I still walk into things in places that I am not used to and there is always the danger of traffic.
We shall be going away on holiday soon. The Eyeless Trust have given us money to hire a caravan at the seaside. Mum gets tired of being at home all the time, and we are both really looking forward to our holiday.”
James and Stuart are 10 years old. They live with their parents and their 2 younger sisters. James has very poor sight because of bilateral coloboma and has behavioural problems which could not be managed in a mainstream school. Stuart has microphthalmia in one eye and also has problems with his hearing. Their parents have financial difficulties as the father is long-term unemployed and they were unable ever to go out together because no one would take care of the boys for them because of James’s behaviour and the demands of the two boys together.
Since the Eyeless Trust was contacted 4 years ago, we have been able to supply the parents with a lot of information and to help them with officialdom. As a result, the family now has proper equipment for the boys and sufficient ancillary help and the boys are much happier. James is now getting on well at a special school. In addition, the Eyeless Trust approached the local authority to make a safe play area for the boys in the back garden and provided money for a bike for James. Also, we have organised respite care for a couple of hours twice a month and have provided funds for a much needed holiday.
David was born with a multitude of conditions and his parents were told that he would never walk or talk. David’s conditions include microphthalmia and coloboma in one eye.
His parents contacted the Eyeless Trust two years ago. Our medical social worker now visits every few months. The Trust has provided grants for holidays and has purchased a special bike which has given David some mobility and is helping to build up the wasted muscles in his legs. Our medical social worker has helped them to obtain higher-rate mobility allowance for David and is also supporting their application for larger accommodation which would have more room for David’s equipment.
David is now four years old and his progress has delighted everyone as he can now stand and walk with a walking aid.
Emily was born with microphthalmia. She is blind in one eye which has no retina and an incomplete optic nerve. Other neural pathways are also incomplete. At birth the microphthalmia was thought to be her only problem, but at 6 weeks she started having bleeds from the eye and nose and these still continue, although to a lesser extent. Further tests on the microphthalmic eye showed a perforated cornea and cataracts and at 3 months she suffered quite severe infections in the eye which required hospital admissions. Emily visits two hospitals which are 50 miles apart, one for the microphthalmia and one for neurological services.
The Eyeless Trust has helped with transport costs, subsistence costs whilst Emily’s parents have been at the hospital, and have been able to acquire other charitable money to provide Emily with private nursery education until she is old enough to qualify for statutory assistance so that she can mix more freely with other children and improve her social and play skills.
Because Emily came to our attention at an early age, we have been able to offer support through all the early anxiety and stress and to involve local medical and pre-school teaching services. Without this, Emily would have slipped through the net of the support services in her own home county, as Emily’s medical care is conducted in two different counties from her own.
Today, Emily is a delightful little girl reaching all her milestones early and her parents are confident that all the necessary services are in place to give her the best of care and educational opportunity.