ALL money raised will go directly to Jigsaw Children’s Hospice to support the incredible team who are helping support patients like Jodie.
Jodie has raised an outstanding £30k for The Sick Children’s Trust and is now dedicated in supporting her local hospice that she attends!
We are raising awareness of "Ehler's Danlos Syndrome' a rare connective tissue disorder that Jodie has been diagnosed with and fundraising for Jigsaw Cumbria's Children's Hospice.
The symbol for EDS is the Zebra ~ no two zebra's have the same stripes & no two sufferers have the same symptoms making the diagnostics and treatment more difficult.
Jodie, after many years of pain, complications & multiple major operations, her internal organs began to fail and she was diagnosed with EDS.
The result of this is that she now has intestinal failure and cannot eat meaning she has to receive all her nutrients needed TPN (Total Parenteral Nutrition) intravenously via a central line to her heart, she is attached to a pump for 15 hours per day for this to be administered. Although this brings serious life threatening risks to Jodie it is her life-line.
She also contends with an ileostomy stoma as her large bowel has been removed, bladder failure meaning a second stoma urostomy with removal of her bladder and a gastrostomy tube. She suffers with chronic pain/fatigue/blackouts and dislocations, alongside a whole host of other complex medical issues.
Jodie attends the fantastic Jigsaw hospice for respite where they offer support to her and other children/young adults with life threatening illnesses. Their dedicated team of highly trained staff provide both medical and emotional care to her and our family to ensure a normal routine and make each stay as special and enjoyable as possible. Jigsaw is a place of fun and laugher and creates lifetime memories. Their welcoming staff and safe environment provides a special place for Jodie to receive the care and attention she needs. It is a home from home setting where Jodie's care is personalised towards her own specific needs.
Jigsaw relies on the help and support provided by fundraisers and we are truly grateful for any donations we receive knowing it is going to make such a difference for families using Jigsaw.
Their dedicated work and special care never stops.
Jodie has previously raised an incredible amount of £30k for The Sick Children's Trust and is now dedicated to raising money for Jigsaw and we truly appreciate the love and support given!
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