Hi my name is Helena and In the picture with me is our handsome little boy Ethan.

Safe to say this boy is our world. He lights up every room with his infectious smile and giggle. He is always so happy and loves so deeply and is our hero and brave little boy.

Last August will finally got a diagnoses for Ethan. But it was definitely not what we expected.

Ethan is 7years old, non verbal, has hyper mobility so uses a wheelchair and walker to get around.suffers from epilepsy and global delay and we have recently found out he is also losing his hearing and has liver and kidney problems.

Ethan was diagnosed with mitochondrial disease. A very rare condition and In Ethan case a very rare genetic condition type.

which is life limiting, we haven’t been told his life expectancy as the doctors are unsure. But we have been told to make memories and get a hospice in place for when the time comes.

That’s where Demezia comes in. So I’m doing this challenge to raise as much money and awareness for this wonderful charity. Giving even £1 would help. So please donate and help me achieve my goal not just for Demelza but for Ethan 💙

Demelza delivers extraordinary care to extraordinary children who are facing serious or life-limiting conditions, throughout Kent, South East London and East Sussex. We’re here for them and their families with expert clinical, emotional and practical support at every step – from first diagnosis and for as long as we’re needed.