A group of hardy cyclists from Skye and Wester Ross are set to take on a 24-hour cycle challenge next month as part of a fundraising effort to support twin brothers from Skye living with a degenerative muscle disease.
Twins Ollie and Johnny (11) live in Portnalong on Skye with their mother
Rachel Campbell and father Jani KariKoskinen and attend Bun-sgoil Ghàidhlig Phort Rìgh.
At the age of four, the boys were diagnosed with Duchene Muscular Dystrophy. Children born with DMD have a fault with the longest gene in the body known as the dystrophin gene. This means that those living with DMD cannot produce dystrophin – a protein vital for muscle strength and function. This results in a progressive deterioration in muscle strength and function.
At present, Ollie uses an electric wheelchair at school while Johnny is
able to walk but uses a manual wheelchair when needed. While the
facilities at Bun-sgoil Ghàidhlig Phort Rìgh provide ease of access for the
boys, Ollie and Johnny must contend with greater challenges in terms of
their mobility in their home.
Their father Jani explained: “The house we live in just now is an old croft house, which is lovely – it’s our home and we love it. But without
making changes to it in the future we probably won’t be able to stay here.
“There is not enough space for two wheelchair users to manoeuvre about
and the house is structurally not built to the standard that can have hoists
from the roof.
“The wheelchair service has been great — they have provided us with an electric wheelchair for Ollie to use at school. But then at home, he doesn’t
use it because of space.
“Johnny is in a position just now where his upper body strength is better
than Ollie’s so to some extent he can propel himself in a manual wheelchair when required. But then again that will become very tiring for him in the future.”
In view of the challenges faced by Ollie and Johnny, a colleague of Jani’s
came up with a plan to help raise funds to adapt the boys’ home.
Katherine Tindall — who works as a detective constable in Portree
alongside Jani, a police constable — will take on the gruelling Strathpuffer
24-hour mountain bike challenge in Strathpeffer in January to raise funds
for the boys. She and her husband Alexander, who are from Struan, are
taking on the challenge along with their friends from Strathcarron, Murdo
Matheson and Keith and Anita Pearce.
Alexander said: “Last year I wished I had done it for charity, but I didn’t have time, in the end, to sort it out. So this year we thought we would do it for Ollie and Johnny.”
With the help of Alexander’s friend Ruairidh Macrae, who runs the Teuchter Wagons Facebook page, Alexander and Katherine have used social media to promote a JustGiving page to raise funds for adapting the boys’ home.
As of Sunday morning (22nd December), the page has raised more than £4,500 and, as part of the endeavour, Ollie and Johnny have affectionately been nicknamed the ‘Teuchter Warriors’.
Jani said: “Katherine and Alexander came up with the idea to raise money,
which is obviously great and has given us a lot of hope that we can maybe stay where we are.
“When Katherine told me that she was going to do the Strathpuffer I
thought it was quite amazing. It will be quite an effort to take that sporting event on – I wouldn’t be capable of doing that myself!”
He added: “It could mean that we can stay where we love to live.”
Jani said the family had been touched by the kind responses of the local
community, which he said was another reason why they were keen to continue living in their current home. “
Eilean’ a Cheo Councillor, who formerly served as headmaster at Portree Primary School told the Free Press: “Knowing the family personally having been the boys headteacher in the past, it is great to see the community looking to support the council and other agencies to get the best for Olly and Johnny and officers of the council will continue to liaise with the family to look at all options so that the best support and accommodation is found or developed.
“I personally will also continue to keep in touch with the family to ensure there are appropriate discussions taking place and relevant plans being developed which have their input at the centre.”
If you would like to contribute, you can visit the JustGiving page by clicking here. Alternatively, you can donate in person at Donald John’s café in Satran, the Stop Shop in Carbost and Harbro in Portree.
Article by Adam Gordon