We are trying to raise awareness of ' Ehlers Danlos Syndrome' a rare connective tissue disorder that our daughter Jodie has been diagnosed with. All monies from our fundraising events wil be donated to The Sick Children's Trust.
The symbol for EDS is the zebra, as no two Zebra have the same stripes and no two sufferers of EDS have the same symptons or complications, which makes diagnostics and treatment more difficult.
Jodie, after many years of pain, complications and multiple operations, her internal organs began to fail and at 15 she was finally diagnosed with EDS hypermobility type 3. The result of this is that she now has intestinal failure and cannot eat, so receives all her nutrition via TPN (Total Parenteral Nutrition) a tube direct to her heart. Although this brings serious risks to Jodie it is her life line. She also contends with an ileostomy as her large bowel has been removed, bladder failure meaning a second stoma urostomy and suffers chronic pain/fatigue/blackouts and dislocations alongside numerous other medical issues.
The Sick Children's Trust believe that children should not be seperated from their family , whilst in hospital receiving treatment for a serious illness. They provide home from home accommodation as their mission is to keep a family together during this traumatic time.
The Sick Children's Trust have helped Jodie's family in the past considerably during numerous long stays in hospital, both at Newcastle RVI and The Royal London.
We are truly grateful for any donations we recieve knowing it is going to make such a difference for families with a sick child in hospital and long way from home.