Elijah is a 4 year old boy with a rare neuro-muscular condition called myotubular myopathy. This is a life-limiting condition. Elijah has respite care at Richard House Childrens' Hospice in East London. He needs specialist seating in his wheelchair as he has no muscle control. He has loads of medical equipment connected to him including a ventilator, a tracheostomy and a gastrostomy for feeding. He lives at home with his mum and dad who both work as nurses. He loves Peppa Pig, Mr Tumble and a breeze on his face.
What are we fundraising for?
We are fundraising to help with the upfront cost of a motability car to get him out of the house. This will allow him to enjoy life more, have new experiences and to improve his quality of life. This car will also have power points for all his medical equipment and plenty of space for his specialist wheelchair. Elijah can only go outdoors short distances near his house in his wheelchair. He cannot move from his wheelchair once outside so an adapted car will allow him to go to parks, museums, play areas and the seaside. He's never been to the seaside!
Why are we Crowdfunding?
We are Crowdfunding as the upfront cost of the motability car is almost £4500. Although his parents have secured a grant for part of it they still have to pay £2300. As Elijah requires so much medical equipment and space, the car they require is very large with a lift. Without access to this specialist car Elijah is limited in his experiences and due to his medical equipment, public transport is almost impossible even for short trips.
Who are we?
We are a group of Elijah's godparents and friends that are helping the family. We give as much practical help, love and support as we can to them - as they do for us.
Our rewards are based on thank you letters, cards, photos and magnets from Elijah and his parents, including photos of him in his new car!
Why is an accessible car so important for Elijah?
Due to his muscle weakness, he has to stay in his specialist wheelchair and cannot travel in a normal car or in a car seat. His outlook at present is limited to a small area around his house accessible in his wheelchair. Each outdoor trip requires military planning with all his equipment, spare batteries, feeding pump and equipment to take over his breathing in case of an emergency. Having a suitable car would open up so many possibilities for the family. They can go to the beach or on days out like many families. They can be secure with his medical equipment with charging points in the car - they will never run out of power for his ventilator! As his condition is life limiting, he will have a chance to have experiences of any other 4 year old boy.
Why is the car so big? Wouldn't a smaller one be cheaper?
Elijah has been assessed by the motability scheme and they have taken into account space for Elijah, his wheelchair and all his medical equipment. A smaller car would not be suitable for all of this. His wheelchair is tilted because of his muscle weakness and takes up more space. Elijah is only 4 but will continue to grow and need larger wheelchairs with more space. This car will serve the family for years to come.