Colchester dad fundraising for new wheelchair attachment

Jon Spencer-Slack, 36, of Stanway, was robbed of his mobility and the ability to enjoy his favourite hobbies by Dercum’s disease. 

The debilitating condition, which he was diagnosed with in 2019, causes painful lipomas to grow within loose connective tissue.

Within a matter of months, Jon’s world was turned upside down as he went from regularly running 5k races and practicing jiu jitsu and wrestling to being rendered almost immobile.

Speaking on his diagnosis, Jon said: “I was diagnosed in 2019, working as a chef at the North Hill Noodle Bar at the time.

“I started cheffing at Bill’s in Chelmsford, commuting in and doing 15 hour shifts, which is what I think exacerbated it.

“During lockdown, I couldn’t bare to walk any distance.

"It started off with a couple lipomas in my body, then spreading to my legs and feet.

"We were living in an old townhouse in East Hill at the time, so then we got moved to Stanway.

“In the past six months, my arms have gone, I’m slowly losing them and any little bit of independence I had is gone.”

Jon with his partner, Beki (Image: Newsquest)

Fast forward to the present day, Jon and his family now live in an adapted property, which enables him to move around safely.

He continues to receive care twice a day, to help him administer his medication and for any other personal needs.

Unfortunately, Jon’s condition continues to rapidly decline, with the mobility in his arms quickly reducing, making it difficult for him to propel himself in his wheelchair.

He can rarely leave the house without full support and is unable to live independently whilst the rest of his family are at school and work.

After spending hours researching potential solutions, however, his family have discovered a contraption which could change Jon’s life.

Brave - Jon with his youngest daughter, Luna. (Image: Newsquest)

The Firefly 2.5 is a mobility wheelchair power attachment which could see Jon regain independence and enable him to embark on daily tasks with little assistance.

Jon said: "It sounds stupid because I have spent so much time crying over it recently, but just being able to take my daughter to the park, just her and I, or going somewhere on my own, if it's getting a coffee or going to live gigs— something I used to love doing —would mean the world to me."

Jon is now looking to raise £2,000 in order to be able to purchase the wheelchair attachment. 

He will fundraise by hosting a gaming marathon and carrying out a distance challenge in his wheelchair.

Jon is also looking to volunteer with the Anti Loo Roll Brigade.

To donate visit bit.ly/3Na7D5R.