As a newborn Elijah struggled to breathe and had to be attached to a ventilator. Doctors soon discovered he was suffering from myotubular myopathy.
Myotubular myopathy is a neuromuscular condition which limits an individual’s ability to control their muscles. As a result of his condition Elijah (6) is fully aware of what is going on around him but has limited control over most of his body. He is unable to breathe on his own, and due to a weakness in his immune system, is at high risk of infection.
Due to his complex condition, Elijah needs a specially designed and equipped room. His bedroom needs to be hazard free, very clean but also needs to be full of stimulating toys. Elijah’s parents began renovating his bedroom, but sadly because of financial hardship were unable to make real progress – it was at this point that 52 Lives stepped in.
52 Lives is a charity dedicated to changing someone’s life every week of the year. ‘It is based on the simple premise that people are good, and good people working together can achieve amazing things.’ 52 Lives provided the funding for new flooring in Elijah’s bedroom; donated paint (with help from The Little Greene Paint Company) and £500 worth of presents based on an Amazon wishlist created by Elijah. Additionally, The Athenaeum, a 5 star hotel in Mayfair, donated a dinner and overnight stay for Elijah’s parents, and schools in Essex and Bracknell created beautiful cards that wished him strength.
When the 52 Lives crew visited Elijah and his parents, his mother talked about the difference these kinds of acts make to their everyday lives:
“There are days when you just want to scream, like, I am drained, physically, mentally, emotionally drained. But when that day comes, you have all this. You know, you have all these lovely messages…that is where you get your extra strength from and that is so much. That is much more than material things…the kindness and the messages of encouragement, that is our battery pack. If we had the chance to meet everybody in one room, that would be amazing but I do not think I have enough words for all this. It is beyond words.”
52 Lives ‘choose someone somewhere in the world in need of help, share their story on [their]website and social media, and request what that person needs. [Their] kind supporters then spread the word, offer help if they can, and [they]…change that person’s life…’ Individual projects vary from buying teeth for a man in Alabama, to making video messages for victims of bullying. 52 Lives maintains a one hundred percent donations policy.
Click here to learn more about Elijah and 52 Lives.
