Teenager who will lose ability to walk completes Captain Tom inspired charity challenge across east Kent
16:40, 10 September 2020
updated: 18:23, 10 September 2020
A teenager whose neuro degenerative disease means he doesn't know how much longer he'll be able to walk has been inspired by Caption Tom to take on a fundraising challenge.
Ryan Buggins, 14, from Ash near Sandwich has Juvenile Batten Disease which has already stolen his sight and will eventually deny him other abilities such as being able to move.
Taking inspiration from national hero Caption Sir Tom Moore - a centenarian who raised more than £30million for charity during the Covid-19 pandemic by walking laps of his garden - he came up with his own walkathon.
The Dover Christ Church Academy pupil pledged to walk every day throughout August, reaching a total of 50 miles across the month, to raise some money for the BDFA (Batten Disease Family Association).
He achieved it and some, raising more than £1,600 - almost double his target via a JustGiving page .
His dad Ross Buggins said: "We travelled mainly over east Kent, from Minnis Bay right round to Samphire Hoe and visited all the beaches in between.
"We also dids local walks around our village of Ash and the woods at Canterbury.
"Ryan averaged about 1.8 miles a day but on one particular day he reached almost 4 miles!
"This was such a big deal to him as usually he would require his wheelchair after such a long walk but he’s been pushing through to meet his goals, and is so delighted to have reached his £1,000 target.
"He is especially delighted knowing that this money will go some way to hopefully finding a cure."
Children who have Batten Disease are born seemingly healthy with no cause for concern but as they age they start to develop symptoms which can lead to a lengthy process of getting diagnosed.
Ryan has already lost his sight and is losing the ability to walk and talk. He suffers epileptic seizures which will only become more severe and complex.
His final walk was along Dover seafront where he was greeted with a round of applause by a socially distanced crowd of supporters.
Mr Buggins said: "He really enjoyed all of his walks and has got to see many of his family, friends and teachers which of course made him happy as he was medically isolating throughout lockdown.
"He loves adventuring and is very much an outdoor boy so this was the perfect challenge he set for himself.
"We are immensely proud of him. This was a big undertaking and will be one that won’t be forgotten.
"Living with a rare disease is hard at times but Ryan’s positivity is infectious and everyone loves how he always smiles, no matter what.
"Next year he might not be able to walk at all so I can’t express how wonderful this is that he chose to do this."
You can still sponsor Ryan, here .
Ryan also has a Facebook, Instagram and Twitter account called ‘ Ryan’s Rebellion Against Batten’s ’ where you can follow his daily progress.
