A WORTHING family, struck with a rare condition, is determined to raise enough money to help fund better treatments or even a cure.
Four out of six members of the Fox-Stillwell family have Von Hippel-Lindau (VHL) – an inherited condition which causes numerous tumours to grow throughout the body, including on the brain, eyes and kidneys.
Tantara Fox-Stillwell, 15, started her own charity, Tantara’s Wish, after her dad Allen was diagnosed with VHL in 2001.
In a cruel twist of fate, Tantara was herself diagnosed with VHL two years later. Today, she has approximately 27 tumours in her eyes.
Her mum Tracey, who does not have the condition, described her family, of Westbourne Avenue, as “amazing”.
“VHL has become part of our family,” she said. “We try to help ourselves by helping others and that’s why fund-raising and promoting awareness has become so important. We’ve raised thousands of pounds since we started, and we’re very proud of that.”
Allen, 48, was diagnosed with the condition after he began suffering from dizzy spells.
Tracey said: “Doctors thought he had problems with his ears, or even seasonal affective disorder, but finally a scan showed he had a tumour the size of a walnut in his brain stem.
“Then an MRI scan showed Allen also had multiple cysts on his kidneys and he was diagnosed as having VHL.”
After his diagnosis, Allen discovered his mother, who had died aged 32, had also suffered from VHL but because MRI scans and genetic testing had not been invented, she was never diagnosed with the disease.
Three of the couple’s four daughters also have the genetic condition. Tantara’s sister Ella, 13, has VHL but her non-identical twin Mia, does not. The youngest daughter, Freya, eight, who Tracey was pregnant with when Allen received his diagnosis, also has VHL.
Tracey said: “I think Tantara, Ella and Freya are able to accept their diagnosis because they know their dad has it, so none of them is alone. They are all so positive, and amazing.”
All four members of the family who have VHL are closely monitored, and tumours are removed when it is most safe to do so. While the tumours are usually benign, they are classed as cancerous, and could be life-threatening if they are not removed at the appropriate time.
Tantara cannot feel the multiple tumours in her eyes, but if they are not removed using lasers, they could burst and cause blindness. Allen has had three brain tumours removed since he was diagnosed.
At the moment, the condition is dormant in Ella and Freya.
Tracey, 39, said: “VHL means we have to be very cautious, but we know to prepare for tumours and we know it is not as bad today because doctors do know what VHL is – life expectancy doesn’t have a cap like it once did.
“It’s made us aware of how important genetic science is – with research there’s hope one day maybe my husband and girls can just take a tablet to control the condition.”
The family’s fund-raising has previously paid for a £22,000 drugs trial, and the majority of money raised is donated to the University of Birmingham, where Professor Maher, the person who discovered the VHL gene, works.
On Tuesday, Tantara, a Davison High School student, donated £1,000 to Hurstwood Park Neurological Centre, which removed Allen’s brain tumours.
In July, the family will be hosting a charity golf day at Horton Golf Club in Henfield.