Treatment will help Ethan live normal life

A FUNDRAISING campaign is underway to support the family of a little boy who needs life-saving treatment for a rare immune disorder.

Ethan Tierney is a mischievous 22-month-old boy who last month was diagnosed with an extremely rare immune disorder called Hyper IgM Syndrome.

Living in Cavan with mam Jacqui, originally from Tallaght, dad David and his four older siblings, Ethan’s immune system does not function properly.

According to mam Jacqui, her little boy does not make antibodies to fight infection. Since he was around five months, Ethan has been ill a lot and has had frequent GP visits and seven admissions to hospital.

Jacqui, who grew up in Old Bawn, where her family still live, told The Echo: “Ethan has constantly been on antibiotics, I knew something wasn’t right.

“A child of that age should not be on antibiotics three weeks out of every month.”

Ethan with his mam, dad and brothers and sisters

After a specific immune blood test, Ethan was in January diagnosed with Hyper IgM Syndrome.

According to Jacqui, the only known cure for Hyper IgM Syndrome is chemotherapy and a bone marrow transplant, which is delivered in the UK.

“We’ve been told if we don’t go ahead with treatment, Ethan can’t go to crowded places, school… he’ll never have a normal life”, Jacqui said.

“We’ll be petrified if he gets an infection, even an everyday infection.

“This is life-saving treatment. Ethan’s condition has a poor prognosis as he’s at risk of infection all the time.”

Since Ethan was diagnosed, he has been receiving antibody infusions in Crumlin hospital – a temporary step to keep Ethan stable until treatment at Great North Children’s Hospital in Newcastle.

Ethan celebrating Valentine’s Day at home

According to Jacqui, Ethan, who has a peg for medication and some feeds, is the best he’s ever been thanks to the infusions and is fully enjoying not feeling sick.

“Ethan is so mischievous, he rules the roost”, Jacqui said.

“He’s the best now that we’ve ever seen him… and he’s hitting all his milestones.

“We now see who he is and how he can be; this is the first time he has felt well and he’s into everything.

“He’s delighted with himself.” Witnessing the impact of the antibody infusions on Ethan’s quality of life has reinforced the family’s decision to travel for treatment.

Treatment in the UK is expected to last between six and eight months and to support David, Jacqui and the kids during this time, which will include renting accommodation in Newcastle, their friends and family have started a fundraising campaign.

David and Jacqui, who are both nurses, are also unable to work.

When asked about the campaign, Jacqui said: “We’re completely blown away by everyone, there’s people even reaching out to do fundraisers.

“You really see the good in people when a family is in need.” Jacqui also believes the awareness being raised of Hyper IgM Syndrome is important too.

As the family now looks forward, Jacqui said their hope is that little Ethan comes home after treatment with a “new immune system” and the chance to live a normal life.

For more on Ethan’s story and to support his family, visit Go Fund Me (Baby Ethan’s fight against Hyper IGM Syndrome).