Story
Thanks for taking the time to visit our JustGiving page. On 11May we’re taking part in the Burghley Rat Race Half Mucker, a 13 mile run 🏃🏻♀️ with 150 obstacles! We are raising money for CAUK an amazing charity that has helped support Ellie, Dean and their family. Ellie & Dean’s daughter Ffion is such a bubbly full of life little girl and we are thrilled to be raising money for such a great charity. Read up about lovely Ffion below and if you would like to support us we’d really appreciate it every penny counts! Plus we are getting cold, muddy and wet - surely that deserves sponsorship!!!
Ffion, 4, was diagnosed at 11 months, following pneumoccal meningitis, with multiple brain cavernomas. Cavernoma are blood vessel malformations that form like bunches of grapes and slowly fill with blood. Once they become full they can leak blood into the surrounding brain tissue and cause damage, like mini strokes.
Ffion has had 14 brain bleeds that we are aware of since she was born. So far Ffion is doing well, she has some physical signs which present like mild cerebral palsy. However, we don't know how it will effect her over time - it's a case of watch and wait.
We have recently found out that Ffion has a hereditary genetic version of this condition upon which more research needs to be conducted.
We are raising money for the Cavernoma Alliance which raises awareness of this condition, does research into its different forms, and provides support to sufferers and families facing this condition.
Our daughter is amazingly resilient - an absolute trooper, and we want to do whatever we can to help those helping her.
This is a long-term condition that she will have for the rest of her life, and it could strike at any time. But we don't want it to limit or define her, so we will support her in all ways and for always.
Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving - they'll never sell them on or send unwanted emails. Once you donate, they'll send your money directly to the charity. So it's the most efficient way to donate - saving time and cutting costs for the charity.