Tyrese

Not all rare diseases are apparent from birth. Some symptoms can even occur overnight and turn the lives of affected families upside-down. This was very much the experience of Tyresse and his family.

Tyresse and his mum, Donna, explained how his rare disease diagnosis came completely out of the blue. 

“In 2008 - when Tyresse was 3 - he woke up one morning and was completely blind.  We took him straight to hospital and our initial thoughts was the worst thing a parent could think of: a tumour. When we got to hospital they did lots of tests and we had to wait about a week for the results. 

The results came back to say that he had a very rare condition called Neuromyelitis Optica, (NMO), also known as Devic's disease - a rare neurological condition.  It most commonly affects the optic nerves and spinal cord. 

As we are today it has affected him quite badly, leaving him visually impaired and on very strong medication.  It has meant that we just have to take each day as it comes”.

“When Tyresse has a relapse it presents with lots of nerve pain and he can either loose the use of all his body or his vision. When this happens, we have to go straight to hospital so they can start another form of treatment to help with the relapse”.

“It affects his whole body, his central nervous system. In 2010, he had a really bad episode and he was paralysed and in a coma. It has taken a toll on his body. He has been stable for a few years now with treatment and touch wood he stays this way.

It was really hard to cope with his diagnosis. I had a bit of a breakdown because you blame yourself. It was the mother’s instinct thing where you blame yourself that you have done something wrong but because he has been happy and has always smiled through the whole time, it has made me think that life goes on and it is a blessing that he is here really”.

“You see his peers going out on bikes and doing what they do at 11 years of age. They go out and call for their friends, but with Tyresse we have not reached that stage where he can do that yet because he can’t just go to school on his own. He is in senior school and he has to be taken there and picked up, brought back so Tyresse is limited with what he can do independently. 

As a full time carer I have to be there 24/7. It is hard work but I want to let him start blossoming and going off doing things. It is going to be hard but I am willing to let him as long as he is safe. He can ride a bike, ride a scooter, he plays football and he doesn’t let his disability stop him whatsoever. He does it all”.

“The impact on the family has been huge.  As well as Tyresse, I have a daughter and my youngest son, Joshua, has autism.  He doesn’t have an understanding of Tyresse’s medical needs and so it is quite hard work”. 

“Because Tyresse is registered blind we have also had to make a lot of changes at home. Nothing is left out, everything is put away. We have always been regimented about things and everything is always in its place. We moved from a house to a bungalow and so everyone has their own room. No-one is allowed in Tyresse’s room because they go in - and especially his brother Joshua - will go in there and move things deliberately. We make sure everything is clear and we don’t move things around and Tyresse knows the setting. It means he can just be himself in the house and relax knowing it is safe. We do a quick risk assessment in the morning to make sure nothing is on the floor. He likes to sleep with the light’s on and I basically have to help him with things like showering and with food, telling him what is on his plate and basically just keeping him safe really”. 

“There is nowhere near enough awareness of rare diseases - we feel like we have just been left. We go to our own GP and they are like ‘who’s this boy then and what is wrong with him?’. They don’t know anything about him and I ask, ‘can’t they read through his notes?’. He has this complex rare condition and they could be giving him anything without checking. You just get left once you are diagnosed and you are just left to Google! You do a lot of Googling but that can be quite scary because sometimes horrible things come up. You automatically think they are going to die straight away but really you are looking at the worst case scenario and you don’t really see the positive outcome. You really want to see both sides but I have had to do a lot of stuff myself. 

The responsibility is huge but I have learned a lot.  I didn’t do that well at school and I find it hard for things to sink in but as soon as I heard about Tyresse’s condition I thought right I have to make it sink in and it has.  I know everything about it.  I think I could go and teach about it now because I have had to learn about it for him. 

Diagnosis of a rare disease can break families. If you are not emotionally strong between either you or your partner, it can break family units up.  As a mother you feel you have to be strong for everybody. You just feel like everything is crumbling because you are focusing on just that one thing. As I was pregnant when Tyresse initially was diagnosed it meant that I struggled to bond with my new baby. It sounds selfish but I felt that my priority should have been Tyresse and his difficult medical needs. He has been my main priority for a long, long time but now his condition is stable I have to focus on his brother’s autism because I feel he needs me more.  If Tyresse has a relapse we will address it when it happens but for now we will carry on living as normal as we can, because there is other people to consider as well. He understands that his Mummy’s time is for everyone”.