Ender's life saving treatment

Hi my name is Diane and I am fundraising for an amazingly brave boy called Ender who is 7 years old. Ender lives in Sible hedingham in Essex with his twin sister Emeta and his parents Nadia and Hass. At the age of 2 years old he was diagnosed with a very rare blood disorder called Thalassemia. Unfortunately he has to have regular blood transfusions every 4 weeks so he can maintain his haemoglobin at a safe level, this involves attending the hospital twice a month for a transfusion.

As a direct result of having regular transfusions iron builds up in the body effecting your liver, heart and causing organ failure, osteoporosis, diabetes, thyroid dysfunction and hormonal dysfunction resulting in failure of gonad function.

So the only way to survive was for Ender to have a bone marrow transplant.

The transplant procedure is a long and complex treatment. Ender has endured being isolated in an air filtered cubicle to prevent infections whilst recieving a high dose of chemotherapy to remove his immune system and bone marrow to make space for the transplant.

This extensive treatment has side effects of alopecia, skin rashes, infusion related effects similar to flu, nausea and vomiting, this period typically last from 4-8 weeks. Once the bone marrow transplant is complete it will take 3-6 weeks for the cells to produce mature blood. Ender has to stay in isolation to minimise the risk of infection.

Once he is allowed home he will continue to be seen twice a week and will have to remain at home and can not enter school public places, restaurants etc and be on a 'clean' diet to minimise the exposure to infection causing pathogens.

Ender's life will change completely with extra measures being put in place with extensive medication and hygiene regime to prevent infections.

He will not be able to return to school for a least 6 months or longer. as you can appreciate this is going to be tough for a 7 year old being away from his peer group and such a lot of pressure on his parents who will have to change thier lives to look after Ender.

Such a brave young man and a fabulous caring supportive family.

Ender has been looked after by St Mary's hospital in paddington London. They have been involved with extensive research for this condition and Ender was selected to be the first child of his age for treatment.

This is such an amazing opportunity for Ender if successful he will be able to live a full and happy life without endless transfusion.

I am asking everyone to give whatever they can so the hospital can continue with research into this condition and we can all help such a beautiful family. As mum and dad are juggling with the hospital and looking after Ender sister Emeta, they can not work so with the added stress of finances they are struggling.

Let's see if we can help, even just a small amount will make such a difference to thier lives and for children in the future