Aisha (MPS IV)
Aisha has MPS IVA, Morquio disease.
Aisha was born in 1997 and her diagnosis came when she was seven months old. We lived abroad at that time. These were no doubt the ‘happy days’ for us because Aisha did not know about the complications of her disease and we always hoped that she would get better as any parent facing a diagnosis does.
We remember the day very well when the MPS Society visited us. It was the turning point in our life and one thing that keeps me going even today is the comfort that we received from the Society at that time. We were given the ‘yellow Morquio booklet’ and some other literature. For the first year we kept it hidden in our bedside drawer and when we went through the booklet we tried not to look at the pictures. Until one day it became easy to pick up the booklet and read it for information, as by then we were actually relating some of the things our daughter was starting to go through. Now we give the booklet to anyone who is interested in her condition.
In 2004, Aisha had a neck fusion at Royal Manchester Children’s Hospital. She was placed in halo traction for eight months (a unit that supported her head after the operation and restricted sideways or up and down movement). The doctors and nurses looked after Aisha excellently and made her four-week stay at the hospital really comfortable. It was a very difficult time, as Aisha needed a lot of care and having a younger sibling who needed equal attention added to our pressures.
Aisha has a Statement of Special Educational Needs and she attends mainstream school. Aisha accessed the services of The Hospital School whilst in her halo. She was on the outreach service, which enabled her to be taught at home every day for a few hours. She did so well even in the first few months when she had no balance and could not walk. She was awarded with an achievement certificate and was given the opportunity to carry on with her education, which no doubt she would have missed out on if this service had not been available.
Looking back, we had passed the first hurdle but there were many more to come. As parents we have battled on fighting for Aisha’s needs. We have been told, as Aisha attends mainstream school and does not having learning difficulties, the resources available to us are minimal. We have no respite for Aisha and we have had endless meetings regarding housing adaptations.
One year, Aisha’s school nominated her for the Lord Mayor’s Young Person of the Year Award. She was the youngest nominee and one of the eighteen finalists out of thousands of applications. This was a very positive turning point for Aisha after a very difficult year.
She uses a manual wheelchair to get her around, as her mobility is restricted. She is unable to wheel herself. She will need to use a powered wheelchair for the sake of her independence. We have problems buying clothes for her because of her size. This is another difficult concern which we face, as her sibling, who is younger than her, is much taller than her. Aisha always felt that by having the neck fusion she would grow in height. She always talks of getting taller. She admires all tall things. It is painful to hear this even though we knew from the start that her stature would be affected.
After so much time, you could say we are still in the process of accepting her illness. The process is not easy and accepting it does not happen all at once. Acceptance is not about being happy with Morquio Disease. To us it means that we have made room for Morquio in our lives.