This week, we’d like to help a single mum called Kelly who is caring for a child with a degenerative, terminal illness.
Monnay seemed healthy when she was born, but just before her 5th birthday she started to have difficulty with daily tasks like getting dressed and she was struggling to follow simple instructions. After a lot of testing, Monnay was diagnosed with a very rare form of Batten disease – she is one of just two children in the country with this strain of the disease.
Kelly said: "Monnay's symptoms came out of the blue. She was born healthy and reached all her milestones. It's heartbreaking to see her deteriorate so rapidly."
Three years on, Monnay is now blind, unable to talk, in a wheelchair and she has short term memory loss, which causes terrifying hallucinations. She needs intensive 24 hour care, so Kelly left her job to care for her and her little sister (she’s 3 and thankfully tested negative for the disease).
The doorways and stairs in their house are very narrow, so Kelly has to carry Monnay everywhere. They’ve just found out they will be able to move into a council house that can be adapted for Monnay’s needs. It’s a big move for the 3 of them, but one that will hopefully give them all a better quality of life.
When they move, there is going to be a lot of things they need. Monnay’s little sister shares a room with Kelly, so doesn’t have any bedroom furniture at all and Monnay needs sensory equipment for her bedroom. We’d love to help provide it for them. We’d also like to pay for driving lessons for Kelly to make it easier for them to get around.