Holly’s skydive raises more than £2,000 for baby Otto
A woman has completed a skydive 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, took the plunge at East Leys Farm, Grindale this month.
She set up a GoFundMe page in support of her fundraising efforts and was originally was looking to raise £800. The target was then adjusted to £2,600 after gaining significant support.
Holly is well on the way to hitting this new total – she has now accrued £2,392 thanks to donations from 70 supporters.
Otto Sparkes 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, which 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 or 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 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."
Go to www.gofundme.com/f/baby-otto-ebq9m to support Holly’s fundraising campaign.