My name is Thea, I’ve just turned eleven years old and I live with my brother Nate (who is disabled),my mam and my dad – we also have a rabbit and a dog. We are from Gateshead, which is in the North East of England.
Nate loves the Lion King and most Disney films. He likes bright lights and sensory objects. He loves feeling things and absolutely adores our dog Freddie because he is so fluffy. He also loves to play on his toy drum and make lots of noise. Nate turned seven on 26 June and for his birthday I made him is own sensory book.
Nate enjoys listening to music and rolling around on the floor. He also finds it funny when he pulls my hair. He doesn’t like being stuck in his chair all day, being in pain or feeling unwell. He also doesn’t like it when he gets hot and sweaty (we don’t know whether or not that has to do with his epilepsy, though).
I don’t know how Nate feels about his disabilities because he can’t walk or talk or use sign language. He doesn’t know what is happening or what is going on because he is blind. The only form of noise he can make is when he is crying or when he makes vocalisations (noises).
When he is in hospital or having surgery, I don’t really like it because I would usually be sent to stay at my nana and granddad's house; so the only way I could find out about how he was doing was through text messages.
I was six when Nate was diagnosed and wasn't sure what was happening. Because I was so young (I was only in year two) I wouldn’t have known entirely everything but I understand most of it now. Basically, all I knew at the time was that:
I wouldn’t change anything because I love him just the way he is. However, it would be amazing if one day he said ‘Hello Thea’ just once.
In February 2014, Nate was diagnosed with Alpha-Thalassemia Retardation Syndrome (ATRX) and it changed everything. I felt better knowing what was wrong with him. ATRX affects all of his body in different ways and he is classed as PMLD (Profound and Multiple Learning Disabilities).
Nate has respite every month at our local hospice and we have two carers come into our house every Monday, Wednesday and Thursday from an agency. I don’t mind the carers coming in overnight; however, I don’t like him going to respite.
Nate has appointments every few weeks and most of the time they are during school hours. Sometimes if it is an occasional day off, I would have to go to appointments with my mam and Nate and my dad. One time, my brother’s G-J button burst and we spent near enough to six hours waiting for a doctor to replace it under an x-ray, which I watched them do.
Nate used to use a Nasal-cannula tube, which gave him oxygen, and a naso-gastric tube, that gave him food. Now, he uses a Gastrostomy Jejunostomy tube – we just call it a G-Jet- and has to use medication. He still uses a ventilator overnight and sometimes during the day. He doesn’t need oxygen from a cylinder all of the time.
Personally I think Nate is a lot better than he was a few years ago. He spends less time in hospital; however, he still gets very ill.
SWAN UK has helped us meet other families with undiagnosed conditions (and diagnosed conditions). My mam likes to talk to the families because it is easier considering they are going through a similar thing.