Irish twin Boston bound for life-saving treatment for extremely rare condition
Irish child headed for Boston for miracle surgery
The parents of a Dublin toddler awaiting life saving treatment in Boston are urgently fundraising to cover the costs of bringing their son to the U.S.
Sergio O'Connor, a one-year-old twin, was born with a number of complications. Among the most severe is an incomplete esophagus which prevents him from eating, drinking or swallowing.
To stop his trachea from collapsing Sergio has a tube in his throat, and he is fed through a peg tube in his stomach.
The sick toddler, who has been hospitalized since birth, must travel to the Boston Children’s Hospital by Irish government jet for a revolutionary treatment known as the Foker process. The cutting edge procedure will stimulate the growth of his esophagus, thus giving him a better quality of life.
Speaking to the Irish Voice, Sergio’s father, Donal, said his treatment in Boston could take up to six months.
“We have our bags packed, it’s just a matter of getting that phone call,” O’Connor said. “Boston is the best place in the world for Sergio.”
Donal and his Spanish wife Rosa must now raise $131,150 as their contribution towards the costs of the operation as part their agreement with the Irish Health Service Executive (HSE), as well as covering the costs for the duration of their stay.
“This is what we have to pay as we didn’t get the full funding allocation,” O’Connor said.
As part of their fundraising in Ireland, O’Connor, who comes from a family of talented traditional Irish musicians, has received support from several well-known artists. In February a host of Irish musicians including Frances Black and the late Barney McKenna of the Dubliners played a special fundraising concert in Dublin’s Vicar Street in aid of Sergio.
The Dublin-based couple, who married in 2009, were ecstatic when they discovered they were expecting twins.
“Coming out of the hospital we were holding hands and laughing,” O’Connor recalled.
Then during the last trimester of Rosa’s pregnancy doctors detected a problem with Sergio.
“The diagnosis at the time was spot on,” O’Connor said.
“The thing that we noticed was that Rosa was quite large as Sergio was not swallowing his fluids.”
The twins were then delivered on March 5, 2011 by Caesarean section and Sergio was separated from his parents and twin brother, Tadhg, and transferred to intensive care.
“After about two hours he was taken over to Crumlin hospital,” O’Connor recalls. “He is still in the hospital full time.”
Despite turning one on March 5, Sergio has only had a handful of visits to the family home in Donnycarney.
“He has a huge amount of equipment and we don’t want to take the risk of infection,” O’Connor explained.
Sergio’s twin Tadhg even visits his brother in hospital on occasion.
“Tadhg is doing great and flying around. When I bring him to hospital he keeps everyone on their toes,” O’Connor says.
Despite the rarity of Sergio’s condition, he is the second toddler in North Dublin to be born with an incomplete esophagus.
Elie Madden, an 18-month-old twin from Santry, underwent the same procedure in Boston Children’s Hospital before Christmas. She continues to make a steady recovery.
When O’Connor asked a surgeon about the odds of this, he admitted it’s quite rare.
“The doctor said an Irish child presents with this condition every five years or more,” he said.
Luckily, the father says they have learned a lot from Elie’s parents, Eddie and Esti.
A fundraising event for Sergio will take place on Sunday, May 20 in the Burren Irish pub and restaurant in Somerville's Davis Square in Boston.
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