How we changed a Hackney boy's life
February 21, 2017 | Latest News
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.
Elijah is now 6 years old and day-to-day life is challenging. He can’t breathe on his own and 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 have struggled to be able to do the repairs needed to make his bedroom clean, safe and also welcoming for Elijah - the flooring is broken, and the whole room is in need of a makeover. When we heard Elijah's story, we wanted to try to help make his life better. We spread the word among the amazing 52 Lives supporters, and had an incredible response.
This is what we did:
- Raised more than £680 to pay for new flooring for Elijah's bedroom
- The kind people at The Little Greene Paint Company generously donated paint for Elijah's bedroom (thanks so much to one of our supporters, Eugene, for letting them know about Elijah). And a family friend of Elijah's donated their time to paint his bedroom.
- Bought more than £500 worth of essential gifts for Elijah from his Amazon wishlist.
- And finally, Elijah's parents are going to have a night they will not forget. We were hoping to give them a simple meal out together. But the wonderful people at The Athenaeum - a 5 star hotel in the heart of Mayfair - have donated dinner for two at their Michelin star restaurant and a night away. Thankyou so much to Jeremy Hopkins, the general manager of the hotel, for his incredible kindness.
Thanks to everyone who helped make this happen, and to Gala Bingo for their amazing fundraising efforts.
We went to meet Elijah and his parents. They talk about the difference your kindness made to them in the video below.