The parents of Birmingham boy will be pushing themselves to the limit in a bid to understand the day-to-day challenges faced by their beloved son who has a rare degenerative condition.
Alex and Dani Jealous, along with a team of family and friends, are aiming to walk 100 miles non-stop – blindfolded! They are hoping the gruelling challenge will help them better understand life as experienced by nine-year-old Oscar, who was diagnosed with Batten disease in February 2020.
The husband and wife are also launching the ambitious bid to raise vital funds for Acorns Children’s Hospice, a charity that has supported their family since Oscar’s diagnosis.
The couple said: “The idea is to walk 100 miles in Oscar’s shoes and try to emulate what he goes through on a day-to-day basis.
“Oscar’s condition means he has epilepsy, cognitive disfunction, due to the fact that it’s a neurogenerative disease and his brain isn’t working how it’s supposed to, which also affects his muscles, and he’s fed through a gastric tube.
“But all of this is amplified and made 10 times harder because his disease has caused him to go blind and he’s a nine-year-old child who has no visual representation to help him calm down or focus.
“So, doing the challenge continuously with the sleep deprivation will represent the mental aspect and the fatigue as things stop functioning, and the blindfold will mirror his blindness.”
The walk, movingly named ‘100 Miles in Your Shoes’, will be taking place over three days in August from 26-28, with the funds raising being split between Acorns and Oscar’s Equipment Fund.
The team, who will stop only for food and refreshment breaks, hope the challenge will help them experience what life is like for Oscar and raise awareness of the ‘amazing’ work of Acorns.
Oscar was diagnosed with Batten’s disease in February 2020. It followed years of testing and challenges because of its complexity and came with the heartbreaking prognosis that his life would be limited.
Alex explained: “To get that diagnosis was shattering. We were told the anticipated life expectancy was early teenage years if we were lucky.
“There are no words that will ever make you comprehend what you’re hearing. The thought of it is so absurd. Being able to process that as a parent is impossible, you’re never going to get your head around it.
“But the biggest thing is nothing prepares you for having to live with it and because his condition is degenerative, you’ll find on a month-to-month basis or even a week-to-week basis if things are particularly bad, that something changes.
“There’s something else, another medication that’s now required or there’s a different type of behaviour that’s made itself a problem to manage. That’s all on top of the disease itself.”
Oscar and his family have found a lifeline in Acorns Children’s Hospice, with the youngster visiting the hospice for short breaks to provide dad Alex and mum Dani with important respite, while the whole family, including younger brother Charlie, enjoys garden plays and family swims.
The family also receives vital emotional, psychosocial and practical support from one of Acorns specially trained Family Support Workers, Fiona, who is ‘always at the end of the phone’ whenever they need her.
And it’s for this reason Alex and Dani are raising money for Acorns, to give back and to help the charity raise the funds it needs to continue because there are no limits to the care and support Acorns provides local children and families.
“Acorns is a very very special place and a place that’s close to our hearts. So, if we can help ease the financial burden, why wouldn’t we fundraise for Acorns.”
Acorns Children’s Hospice provides specialist palliative care for life limited and life threatened children and young people across Birmingham and the West Midlands.
In the past year, Acorns has cared for over 800 children and more than 1,000 families, including those who are bereaved.
It cost Acorns £27,000 per day to provide its lifeline care and support, the bulk of which comes from fundraising and donations.
To learn more about Oscar’s journey and his fight against Batten disease please visit www.bemoreoscar.co.uk. To sponsor Alex, Dani and the team in their challenge, visit www.gofundme.com/f/100milesinyourshoes
ENDS
For more information or for interview, photograph or filming opportunities, contact the PR and Communications team:
David Chamberlain: 01564 825020 / 07817 612422 / david.chamberlain@acorns.org.uk
Nicki Robinson: 01564 825062 / 07814 302153 / nicki.robinson@acorns.org.uk
Notes to editors:
Due to the sensitive nature of Acorns care services it refrains from using the words ‘terminal’ or ‘terminally ill’ in its press releases and public communications when describing the children who use Acorns and the conditions that they have. Instead, Acorns uses the words ‘life limited’, ‘life limiting’, or ‘life threatening’. Acorns kindly requests that you respect this in your communications when referring to Acorns Children’s Hospice. Acorns children have a lot of living to do. Thank you.
- It costs £27,000 every day to run Acorns services providing care for children and support for their families. The charity relies heavily on donations to fund the majority of its activities.
- To find out more about Acorns, please visit www.acorns.org.uk
