A Wisconsin man has completed the 170-mile walk from Dublin to Galway to raise funds for research into a rare genetic condition that took the life of his daughter.
Walking the last eleven miles through howling wind and rain and having celebrated his 71st birthday on the road, Wisconsin man John Ewan has completed the 170-mile walk from Dublin to Galway in order to raise funds for a five-year-old Irish boy.
The American man undertook the 13-day challenge, fundraising and raising awareness along the way, to aid the MSD Action Foundation (otherwise known as SavingDylan.com), a charity established and named after a Dylan Finglas, a young boy who suffers from the rare and fatal genetic condition Multiple Sulfatase Deficiency (MSD).
In 2017, Ewan lost his own daughter Barbara to the same condition. She miraculously lived until 40 with an illness that rarely sees suffers make it into their teens.
Day 12: Destination Cong, Galway. John has dedicated todays walk to his beautiful daughter Barbie that suffered from...Posted by SavingDylan.com on Dé Luain 30 Iúil 2018
Completely the “170 Mile Walk Across Ireland to Cure MSD” in her memory, Ewan dedicated each day of the challenge to a different young MSD patient, walking a dozen miles every day and battling through the rainy Irish weather.
MSD is an extremely rare condition that currently only has 62 or so living patients in the world. The disease means its sufferers are missing essential enzyme activity for normal cellular functions, which leads to a toxic buildup within cells that can eventually reach their brain cells.
“Rapidly in the next years, unless treated, most or all of the following will be affected; his sight will be compromised & lost, his hearing will be lost, the ability to stand/walk, the ability to swallow and his organ functions will deteriorate and eventually fail,” Dylan’s family explained.
The five-year-old is currently unable to walk, he has a feeding peg implanted in his abdomen and his eyesight is compromised, among other issues, but his family has said that his hearing, breathing, and heart are still good.
Dylan's family is currently attempting to raise over $2 million in order to initiate research into the condition, with the aim of establishing clinical trials.
“I’m raising funds so that it doesn’t have to be a death sentence. I feel an obligation to help parents in the same situation as I was in,” Ewan told TheJournal.ie.
“Researchers think they have a few very positive approaches and we need funding to support that.
"Physically I’m exhausted, my feet are hurting, but the Irish people have been so welcoming.
"People have been donating along the way – one pub in Moate is donating their tips.
“My hat is off to the Irish people.”
The 71-year-old had been in touch with the Finglas family for several years, as a fellow parent of an MSD patient. He is also on the board of a similar foundation for MSD established in the US called United MSD Foundation.
“He’s been such a great support. It was something he could do and the hope was we’d get the support that such an effort deserves,” said Dylan’s father Alan Finglas.
“We need more support to get to clinical trials – we have to keep moving forward. There’s no question that cost is the biggest obstacle – if we were able to fund it, we could be treating patients by now. It is a rare condition and that means that the will isn’t always there from industry unless we can prove that a treatment will work and is safe. This would de-risk it so that an industry investment could bring treatment forward.
“We very much depend on the generosity of the kind people who might make a donation. We are adamant that we will deliver for MSD patients but we need further support in the form of donations in order to do so.”
From John, please read: 170 Miles completed! Nothing but howling rain, blowing wind & temps in the low-50s all the way...Posted by SavingDylan.com on Dé Céadaoin 1 Lúnasa 2018
Ewan thanked everyone who had helped him along the way in a Facebook post after he crossed the finish line.
“As I walked through this stormy weather today, I thought of all the days our precious MSD children struggled to survive & live a normal life,” he wrote.
“But we persist against the scourge that is MSD...for we shall not fail.”
You can continue to donate to his campaign here.