NORTHSIDERS are rallying around to support the family of a beautiful five-month-old baby born with an extremely rare condition that requires round-the-clock care.
Cian Oliver Byrne was diagnosed with a genetic syndrome called Cri Du Chat (Cry of the Cat) four weeks after he was born in the Coombe Hospital in Dublin 8.
There are only 14 other cases in Ireland known to the Cri Du Chat society and there’s no cure or specific treatment for the condition and Cian, who also has partial Down Syndrome, has difficulty swallowing meaning he’s constantly at risk of choking.
Parents Joanne and Andy Byrne from Finglas are now devoting all their time and energy with support from Cian’s brothers Craig (22) and Shane (20) in providing 24-hour care to their son at Crumlin Children’s Hospital with the help of family and friends.
Cian is due to leave the hospital shortly meaning the family will have to find a way to provide the full time care he needs to stay alive. However, they’ve been deeply moved by the support shown by the local community, including businesses that have helped them prepare the house for Cian’s homecoming.
A Facebook page set up just two weeks ago already has over 2,500
‘likes’ and messages of support are pouring in. Cian’s aunt, Lisa Kennedy Byrne, who is helping out with her nephew’s intensive care routine, said the support means an awful lot to the family.
“It’s really tough, especially on Joanne and Andy, but in saying that everybody in the Finglas area and surrounding areas have been really great,
? she told Northside People.
Lisa says the family is still coming to terms with Cian’s devastating diagnosis that came shortly after a difficult pregnancy on June 30.
“When he was born he appeared to be fine but within hours he became gravely ill and was admitted into the high dependency unit,
? she said.
“Genetic consultants were called in and tests carried out and they came back four weeks later with the diagnosis.
“Having two conditions has caused complications in his treatment. He has no swallow so he has to be suctioned regularly to prevent choking. His lungs didn’t fully develop. He’s had Pneumonia and chest infections, but he’s fought it all off.
“He’s going to need 24-hour care when he comes home. He can’t be left alone for a minute because he’d choke. But the doctors say Cian has a great little personality and that’s giving him a fighting chance.
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Unfortunately Cian’s conditions are life limiting, but the family is determined to give him every chance to lead the fullest life possible.
They are being supported by the HSE, the Palliative Care Team at Crumlin Hospital who will continue to keep Cian comfortable when he comes home and the Jack and Jill Foundation.
Mum Joanne will also receive respite support from The Laura Lynn Foundation but the family will have to find a way to pay for extra nursing help, which costs e16 an hour.
Andy’s job has also been supportive and colleagues in work have rallied around and donated holiday hours so he can spend as much time as possible with his son.
The support is giving the family strength to cope with their ordeal and given them hope for Cian’s future when he comes home. His parents have expressed their deep gratitude to the local community for all their expressions of encouragement.
“It has been tough going and very emotional for us but we have to keep going as our little man has proved he is a little fighter,
? said mum Joanne.
“We have watched him fight every day to stay with us and we just want to take the advice of the medics and get him home out of the hospital environment.
“Cian is doing well at the moment and I just want to also thank the nurses of Crumlin Children’s Hospital who have been very good to Cian and the family since we have arrived here.
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Aunt Lisa is helping organise fundraising events to help pay for Cian’s ongoing care at home, including a carol service taking place on Thursday, December 5 at Plunkett Green, Finglas West.
“Cian is very ill but he has proved everybody wrong by still being here today,
? Lisa said.
“You’d have to see it to understand what the little fellah has to go through every hour. He can’t be left alone even for one minute.
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Carols for Cian takes place at 7pm on Thursday, December 5 at Plunkett Green, Finglas West, Dublin, 11. The event will be family friendly with appearances from Mickey and Minnie Mouse, Peppa Pig and Santa Clause. A benefit event will also be taking place at the Regency Hotel in Drumcondra on February 1.
A bank account for donations towards the Care for Cain fund will be opened over the coming days in Allied Irish Bank, Santry, Dublin 9 Sort Code: 93-23-53, Account Number: 26805025.