Getting into deep water to help sick children




A relay team of six will swim the Irish Sea, from Wales to Ireland, this month to raise money for families that have to travel abroad for treatment for their children, writes Helen O’Callaghan.

This month, six swimmers will gather in Holyhead, in Wales, to swim in relay across the 100km Irish Sea to Dublin.

The last six-person relay team to try this — in 1993 — only accomplished it after three gruelling attempts.

“They were a team of top swimmers. On the first swim, 50% of them got seasick. On the second, conditions turned on them. The third time, they got across,” says Ger Kennedy, captain of the current relay team.

Ger Devin, from Greystones, is also on the team. He has swum the English Channel and the 45km Manhattan Line. His big worry is seasickness.

“We’ll each be called on five or six times to swim.

"So, you have an hour in the water at a time.

"Then, you’re on the boat for five hours to get yourself warmed up, to get some food into you to rebuild your energy — but you have to hold that down with the boat rocking,” says Devin, who got “violently seasick” doing a relay swim in the English Channel three years ago.

What will keep him and Kennedy going are the faces of two children: for Devin, 17-month-old Erin, diagnosed with infant acute lymphoblastic leukaemia, who travels from Ireland to London’s Great Ormond Street Hospital for CAR T cell therapy; for Kennedy, 21-month-old Mikey, who goes regularly to Manchester for leukaemia treatment.

Both children are supported by the Gavin Glynn Foundation, a charity that organises logistics and covers expenses (flights/accommodation/living costs) of families from Ireland that are bringing sick children overseas for treatment.

The Irish Sea swim — which it’s hoped will break a world record — is in aid of the foundation. Each relay team member is paired with a child the charity supports.

“Each swimmer has met the child they’re swimming for — they’ve a connection with that child,” says charity founder, John Glynn. This will help the swimmers to focus.

At their toughest time, no matter how hard, they’ll know the child’s treatment is a million times worse.” Besides seasickness, the swimmers will face other challenges — distance, temperature (12°C and possibly lower in some spots) and the Lion’s Mane jellyfish, noted for its painful sting.

“If it stings your face, the impact’s very hard on the body,” says Devin. When he met Erin, the little girl’s sister signed the rubber swim cap he’ll be wearing.

“On the days I’m out there and I hit that black spot and think, ‘what am I doing here?’, what I’ll go back to is this little name on my cap and little Erin.”

John Glynn understands the plight of families that bring their children overseas for cancer treatment. In 2011, his 18-month-old had a large tumour covering his pelvic area; it had also spread to his lungs.

After six months of intensive chemo, plus surgery, Gavin needed proton beam therapy to kill any remaining cancer cells. The treatment was in Switzerland.

"This was hugely stressful. We had a child going through cancer and we were being sent to another country, without knowledge of where we were going.”

John, his wife, Jayne, and Gavin’s two siblings spent eight weeks in Switzerland. It cost €25,000 — made possible with fundraising by family, friends, and their community.

Erin.
Erin.

However, just before Gavin’s third birthday, the cancer returned.

The only option was Brachytherapy (form of radiation). Gavin was deemed unsuitable for that treatment by a centre in France. John investigated other possibilities.

“On social media, I found a family whose son had the same tumour, who’d been treated with Brachytherapy in Amsterdam.”

A six-month stay in Amsterdam, while Gavin underwent treatment, cost €10,000. Again, family/friends fundraised.

But the nightmare continued. By February 2014, the cancer had grown again. Doctors said nothing more could be done, that Gavin should be taken home to enjoy his remaining time.

“He went into his appointment on his scooter — he was jumping up and down on the oncologist’s couch. To hear our child was going to die and he so full of life, it was unfathomable to us.

"Gavin wanted to live. It was up to us to give him that opportunity to fight, to find out what was available,” says John.

After exhaustive investigation, a Texas-based hospital emailed about a possible treatment and surgery for Gavin.

A media campaign in Ireland raised the €350,000 needed. Devastatingly, though, post-treatment scans revealed the tumour was back. Little Gavin died in 2014.

The following year, John and Jayne set up the foundation.

“Many families are going through what we did. Switzerland, Amsterdam, Texas — we had to do all of this on our own, logistically. We don’t want anyone else to go through that stress, when their main focus should be their sick child.”

To date, the charity has helped 83 families.

Excluding the clinical/treatment side, we cover all their expenses and look after all logistics of travelling/living abroad. The family just needs to pack a bag. We also arrange international second opinions for families.

"And we pay for precision medicine testing to find the exact type of chemotherapy to treat a child.

“This month, we have seven families in Germany for proton beam therapy. We have two babies in the UK.

Mikey.
Mikey.

"We have four children with eye tumours travelling to Birmingham for treatment and we have two families undergoing a second opinion option in the US. It’s a busy month,” says John.

As the six swimmers wait for the three-day window this month that’ll give them their best chance of crossing the Irish Sea, thoughts of these children won’t be far from their minds.

Donate to Gavin Glynn Foundation (https://tggf.ie/): swim team fundraising page is at www.idonate.ie/Irishseaswim.


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