This week, we want to help a 6 year old boy from Hackney called Elijah.
When Elijah was born, he was not breathing and had to be resuscitated and placed on a ventilator. He was also very floppy. A muscle biopsy confirmed that Elijah had myotubular myopathy, a life limiting genetic neuro-muscular disorder.
Day to day life for Elijah is challenging. He can’t breathe on his own, so is hooked up to a ventilator 24 hours a day. He is at high risk of infection so sometimes needs to be in intensive care. He has poor muscle control and no head or trunk control. He has some limited movements in his arms, so he communicates using an iPad and a communication book. He has no eye movement and poor vision. But his cognitive function is completely normal, so he is fully aware of what is going on around him.
Elijah’s parents, Onessa and Jeroume work part time as nurses. They have carers to help them with Elijah, but the demands on both of them are high and they have little time for anything other than work or caring for their little boy.
They live in a housing association property in East London. It is in need of repairs, but they have little time or money to do anything. Elijah’s bedroom in particular is becoming unsafe. The flooring is chipped, which is causing a hazard for infection as it’s difficult to keep it clean. His bedroom walls are old, faded and covered with Peppa Pig - not what Elijah would choose!
And the chair in his bedroom (which is used by either the carers or Elijah’s parents 24 hours a day) is old and worn out.
These are such simple things, but fixing them would make a world of different to Elijah and his parents.
So, with your help, we want give Elijah’s room a makeover.