‘Devastated’: Bridlington family shares heartbreak as daughter diagnosed with life-limiting condition
The family of a nine-year-old Bridlington girl has launched a desperate fundraising campaign to provide an adapted home for their terminally ill daughter.
Raven Woodcock was diagnosed with rare genetic condition Sanfilippo Syndrome at the end of February this year.
Sanfilippo Syndrome is a life-limiting condition that affects how the body breaks down waste at a cellular level, slowly causing 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 was initially diagnosed with autism at the age of five. Raven’s mother, Lisa Woodcock, of Trinity Grove, said: “At the time, it helped us make sense of some of her differences, and we believed we finally had answers.
“But as the years passed, we began to notice something else — something far harder to accept.
“She started to lose skills. Things she could once do with ease became difficult, then impossible.
“At first, we questioned ourselves. Is this just part of autism? Are we imagining it? But deep down, we knew this wasn’t right.”
Lisa began to suspect that Raven was suffering from Sanfilippo Syndrome, a condition that affects just one in 70,000 children born in the UK each year.
She said: “I saw a post from another parent on Instagram, and I thought to myself, that’s Raven! The girl even looked like Raven - suddenly everything was explained. My mum gut just kicked in.
“Most of the doctors and nurses I spoke to had never heard of Sanfilippo Syndrome. I felt like I was being looked at as if I was being neurotic and I pushed it to the back of my mind.”
Then, in October of 2025, Raven had a huge seizure in the middle of the night. She was rushed to hospital for tests and, following further tests, Lisa and Lee received confirmation of Raven’s diagnosis on February 29.
Lisa said: “It’s hard, my Raven is still my Raven, so happy and full of life. Mums are supposed to make everything better, and I can’t - I feel so helpless.”
Now Lisa and her partner, Lee Cullen, 40, are looking to provide long-term stability for Raven and the rest of their family.
Lisa said: “We are now facing a future that will involve time off work, adaptations to our home, specialist equipment, and changes we never expected as Raven’s needs grow.
“We’ve lived in our house for 15 years, and the landlord has been brilliant, but he moved to Spain a couple of years ago and now he’s looking to sell up.
“Raven 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.
“This diagnosis means we will lose 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.
“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.”
Lee and Lisa have now launched a GoFundMe appeal to raise the funds to buy the house and give Raven the security she needs.
Lisa said: “We don’t ask for help easily, but we truly need it.
“Every contribution helps us focus on Raven, on time together, and on navigating what lies ahead with a little less fear.”
Donations can be made through the family’s GoFundMe page: https://www.gofundme.com/f/ravens-love-for-life