Scarborough woman takes on skydive after Bridlington baby's devastating diagnosis
A Scarborough woman is set to take the plunge to support a family whose son was diagnosed with a very rare condition.
Holly Blackband, who is the manager of Station Avenue Pharmacy in Bridlington, will undertake a skydive on Saturday, June 27 at East Leys Farm, Grindale.
Otto Sparkes, who is four months’ old, was diagnosed with Krabbe leukodystrophy in May. It is a rare inherited condition that damages the nervous system and affects around one in 100,000 people worldwide.
Ella Burton, 27, a former Bridlington resident, and her partner Keiron Sparkes, 30, found out Otto has the rare disease and that it has no cure.
They have been told he has 13 months to live and he is currently the only known case in the UK. Krabbe disease strips the protective coating off the nerves, causing the brain to lose its ability to communicate with the body. This leads to progressive muscle stiffness, loss of motor skills, and sensory problems.
Ella said: “It’s heart-breaking. Not the words you ever want to hear that the doctors cannot do anything, no treatment, just awful.
“Otto means the absolute world to us, he’s our rainbow baby which is even worse. He almost fixed my life. I got so much better in terms of mental health, we were so happy and it was everything we’d always wanted. “We were expecting a normal life. To come to terms with the fact you'll never hear him speak, achieve his goals is just dreadful.”
Otto will soon lose his vision and hearing, while Ella said he has already begun struggling to feed. The disease eventually becomes fatal when respiratory function deteriorates. Consequently, Ella and Keiron want to take him to the beach and to Disneyland in America, rather than “just sitting and waiting for the inevitable to happen”.
Holly has set up a GoFundMe page in support of her skydive endeavour. She is looking to raise £800, and has already accrued more than £600, thanks to 22 donations.
Holly said: “I work with Otto’s grandmother Rachael here at the pharmacy, and I’ve worked with her for more than 16 years so the the news touched close to home.
“I just want to help the family and let them know everyone is supporting them. She is a very close family friend and I was here when she got the news about Otto.
“It’s absolutely heartbreaking. I will be jumping on Saturday, June 27 at 4pm. People can support the family by visiting the GoFundMe page.”
Go to https://gofund.me/d71ff5e67 to support Holly’s skydive fundraiser.
Another fundraiser is also tackling a tough challenge to support the family.
Chloe Paterson will be running the full length of the Trans-Pennine Trail, which is around 215 miles.
Chloe, who set up a JustGiving page, has raised £9,380 thanks to the generosity of 434 supporters.
Chloe said: “his challenge is going to push me physically and mentally, but it is nothing compared to the strength Otto is already showing every single day, and the courage Ella and Kieran now need as they navigate a reality no family should ever have to face. Every mile I run is for Otto.
“Every donation, no matter how small, will go towards helping support the family with whatever they may need during this unimaginably difficult time.”
Go to tinyurl.com/2cyptkxe to support Chloe’s trek.
You can also donate the family's fundraiser via https://www.justgiving.com/crowdfunding/for-otto