Charity Helped 4-Year-Old with Ehlers-Danlos Syndrome
A fund raising activity is planned for Ehlers-Danlos Support UK. This organization has supported Lewis as he struggles with Ehlers-Danlos Syndrome.
Written byKerry Ashdown
“Little Lewis Green, who attends John Wheeldon School, faces an uncertain future because of Ehlers-Danlos syn- drome, a rare genetic condition that affects collagen pro- teins in the skin. Common symptoms include loose joints, abnormal skin and fragile body tissues.
Coronation Street’s Cherylee Houston, who plays Izzy, suf- fers from a form of the condition – Ehlers Danlos Type III hypermobility type – and became the soap’s first disabled actress in 2010.
Lewis, four, is currently undergoing tests to determine if he has the most severe, vascular form of the condition which could be life-limiting.
He has reduced immunity from ailments and struggles to walk far, but soldiers on with a smile on his face, mum Emma Green said.
The 24-year-old, of Cotonfields, has been supported throughout the family’s ordeal by Ehlers-Danlos Support UK and next week she plans to thank the charity with a fund-raising and awareness day in Stafford town centre.
She said: “I feel guilty because we gave it to him – it came from me and his dad.
“He is also being tested for autism and hasn’t got an immune system. But he never complains.
“The charity has offered us emotional support; without them I don’t know what I would have done. They have also just had a conference where I met other parents in the same situation.
Stafford Street clothing store Trendeez is hosting the Hal- loween-themed charity event on Thursday, October 31, from 10am. There will be fun for all the family including pumpkin carving and a raffle.”
A fund-raising and EDS awareness day is being planned at Stafford town centre in the UK.
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