Helena is aged 6 and lives with her family in Barwell, Leicestershire. Three years ago she was diagnosed with a condition called Rett Syndrome. She was only 2 and a half when we found out, so we were absolutely devastated when we received her results.
Helena has a mutation in her MECP2 gene which causes problems for her nerve cells. She does not have full control of her hand movements, has slowed brain growth, problem with her walking and seizures. These are just a few of Helena's problems.
She is also non-verbal and will never talk.
Helena already uses her wheelchair as she struggles to walk long distances and she gets tired easily. Helena is completely dependent on adult help having very little control over her own body.
Our family home needs to be adapted to meet Helena's needs as it is not wheelchair friendly at the moment and a downstairs extension needs to be built as she cant access upstairs on her own.
We need a ramp so she can access the house. The existing kitchen needs to be extended and converted to Helena's bedroom and all doorways need to be made larger. We also need to build a wet room and incorporate a hoist system in the house. When all the adaptation is done Helena will be able to access her own room and bathroom safely.
The Council has approved our application for a Disabled Facilities Grant for the improvement Helena so desperately needs, but unfortunately it is not enough to cover the cost of all the adaptation. We need £8000 to be able to start the work.
Helena is a very happy girl and puts a smile on everyones face. Please give her your support.