Now I know that there are lots of people asking for sponsorship for many different events and I wouldn’t normally ask but my Content Manager, Sally Edgar, is raising money for Ehlers Danlos Syndrome, which her cousin unfortunately suffers from.
Please take time to read the following and any donations or shares of the story would be appreciated to help raise awareness.
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 is 18 years old and 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 and ileostomy as her large bowel has been removed, bladder failure and suffers chronic pain/fatigue.
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.
You can donate to Jodie’s Journey here