Adversity brings out the best in people which is why Ryan Townrow will be slogging almost 50 miles across bleak, boggy moors to raise money for the MPS Society.
Most people won’t have heard of the MPS Society or the disease that it raises funds to research. Mucopolysaccharide Disease is extremely rare, so when Ryan’s niece Isla was diagnosed last September, just four days after her fourth birthday, it sent the entire family into shock.
But Isla’s mum Nic Sykes said they didn’t want to be swamped with feelings of sadness and negativity, even though the onset of the progressive condition means that Isla’s life will be shortened.
Instead the family from Marsden has thrown its combined weight behind raising cash for the MPS Society so that research might benefit Isla as she grows.
“My hope and dream is a cure to stop what is happening to her,” says 33-year-old Nic. “Anything that can happen with that is where I put my focus now.”
Isla suffers from Sanfilippo Syndrome, a form of MPS that manifests itself in developmental delay. It will eventually affect Isla’s speech, mobility and ability to swallow food. It is also a neurological condition that affects brain function.
Isla lives in Marsden with Nic, dad Darren, 38, and brother Toby, aged two, who has been tested for MPS and is unaffected.
Adds Nic: “Isla is a very happy child. She has quite a lot of sleep disturbance - we can be up from three o’clock in the morning. She can also display some aggressive behaviour but she is generally very loving as well.
“It was a complete and utter shock when she was diagnosed. We were devastated. Now we look forward to each day, enjoying family time and making memories. As it progresses we will review the situation.”
For ultra fell runner Ryan, 36, completing a 48-mile-long trek up hill and down dale will bring in funds for the MPS Society and, crucially, raise awareness of Isla’s condition.
Tomorrow (Sunday, January 14) he will set off from Marsden Cricket Club at 8.30am and run across the moors to Edale taking in Wessenden, Black Hill, Crowden and the Snake Pass before making the return journey.
Sponsorship for the run, known as the Trigger Race which he hopes to complete in about 13 hours, has already topped £2,000. At journey’s end there will be a raffle at Marsden Cricket Club for which local businesses have donated some prizes. More are still needed.
Ryan, originally from Uppermill, says: “My missus has been asking if I’m nervous but I have been putting in a lot of training to make sure I have got the distance in my legs.
“The only thing that is going to bother me is the weather.”
As well as sponsorship Ryan is asking for donations of energy drinks and supplements for the run.
He can be contacted on email@example.com