“Taye has an undiagnosed condition. After he was born I had a feeling that there was something wrong as he was having fits but it was hard to explain this to the hospital. He was about 7 months old when the hospital understood there was an issue because he had a seizure whilst in one of the Doctor’s arms. He had been having these seizures since birth, but from my explanation of what was happening to him, they did not recognise it as epilepsy.
Taye has seizures, he has epilepsy, developmental delay, he can’t sit up or walk and he doesn’t talk, he babbles. There are signs of cerebral palsy and his brain has too many folds (polymicrogyria). He has quite a few seizures throughout the day and when this happens I have to pick him up and carry him around. He gets upset but it is hard because I don’t know what he wants, I just have to guess what is wrong with him. He eats well although it is a blended dinner as he can’t eat solids. On top of generally looking after him, he has to have medication, morning, afternoon and night so there is always something to stay on top of with him.
I cope by just getting on with it. Obviously I have my days or weeks where I just want the situation to be over and done with but at the same time I just take each day as it comes. There is always going to be a new problem, a new issue, so I just try and stay strong and deal with each issue. He goes to Acorns and we get 16 days a year. We also have someone from outreach and they will watch him for a couple of hours so I can get stuff done like food shopping but that is only once every couple of weeks. That is all the help I get at the minute.
My life is completely different to how I thought it would be when I was pregnant. You never expect it, especially as I am young. I don’t smoke and I didn’t drink when I was pregnant so it was a big shock especially because they have no answers about why or what happened. It was a shock. It still is a shock. It is a terminal illness but because his condition is so rare they can’t give me an age or anything on how long his lifespan is going to be. From what I know it will not be past teenage years. I had counselling when he first got diagnosed. I found that helped for the first day or two but then I go back home back to reality so it did not really help.
I never get to switch off or forget about it because I am constantly doing medications every single day, I have to dress him every day and watch him have seizures every day so there is no forgetting. It has just become normal. Obviously if we go shopping or out places people can see that there is a problem with him so then I get asked questions when we are out and about. There is no time to just be what you would call normal.
I think it is so important to raise awareness of rare diseases. If more people knew about rare diseases I think they would think more about the parent rather than just ask questions like ‘why can’t he sit up and what is wrong with him?’. It would be great to get more awareness in schools because when he had a tube on his face we had to deal with lots of questions and curiosity. It wouldn’t then make me as a parent feel uncomfortable because you do feel a bit awkward.”
The Rare Beauty project has been designed to encourage people to want to know more about what is happening in the images. We have introduced beauty into every day scenes that people with rare diseases find themselves and through these images we will tell the story of the people, their families, friends and hospital staff involved in their care. We are grateful to BBC Children in Need for their support and to Birmingham Children's Hospital for their assistance.
You can read about a consultant's perspective to rare disease by clicking here.