09/05/2026
🌸 raffle to help us make a lovely donation to Raven go fund me page🌸 if anyone would like a raffle ticket they are £1 a strip. We have a lovely hamper .A £40 voucher for Aloha Bridlington £30 for Bridlington CYP meal for 2 at Audrey's Fish & Chips £10 voucher for candies @£10 voucher for cream .2x box of 4 cookies from Dappa Dessert . If anyone would like tickets message me🌸
‘on the 29th of February, our world changed forever.
We were told that our beautiful daughter, Raven, has Sanfilippo syndrome.
Today, after attending the specialist clinic in Manchester, we received her full diagnosis.
Sanfilippo syndrome is a rare, genetic, life-limiting condition. It affects how the body breaks down waste at a cellular level, which slowly causes damage to the brain and nervous system. Over time, children lose skills they once had — speech, mobility, independence — and eventually the ability to do the simplest things. There is currently no cure.
Raven is nine years old. She was previously diagnosed with autism at five, but this diagnosis explains so much more than we ever imagined. She is funny, loving, full of personality, and deeply cherished. To look at her, you wouldn’t know what lies ahead — and that is both a blessing and a heartbreak I struggle to put into words.
As a mum, I am devastated. I am grieving the future I thought she would have, while still holding her close and trying to be strong for her every single day. I’m learning how to live with fear, love, and determination all at once. Some days feel impossible. Other days, I just focus on making memories and giving her as much joy, comfort, and love as I can.
We are now facing a future that will involve time off work, adaptations to our home, specialist equipment, and changes we never expected — including things like stairlifts and making our house safe and accessible as Raven’s needs grow.
We don’t ask for help easily, but we truly need it.
If you are able to support us by donating or sharing our GoFundMe, it would mean more to us than we can ever express. Every contribution helps us focus on Raven, on time together, and on navigating what lies ahead with a little less fear.
Thank you for reading, for caring, and for holding our family in your thoughts.
Please hug your children a little tighter tonight 🤍 This diagnosis means we will loose our little girl Raven in her mid to late teens and at best early 20s something no parents or siblings should ever have to face.https://gofund.me/eca7daf54
