The mum of a terminally ill child says her family has been "inundated" with kindness since taking her son home to live out his final days.
Caoimhin Adams, eight, has been diagnosed with ROHHAD - a condition with no cure or options for treatment. His body has been slowly shutting down with his family organising a "big party" for him while there is still time.
His mum, Catriona, from Belfast, said her son has always been a "special boy" who beat the odds when he was born and has lived as full a life as possible. Now, the family have brought him home to enjoy a "big party" during his final days.
She told Belfast Live: "Caoimhin is eight. He was born with epilepsy, cerebral palsy and chronic lung disease. But he still attended a full day of school, and loved life, nothing could stop him. He went to Hillcroft and loved school."
In April last year, however, his condition began to deteriorate as he started to become extremely tired.
Catriona continued: "He started to gain weigh. He was a child that always struggled to gain weight and the paediatricians in the Royal struggled to understand why he was gaining weight. His blood results always showed normal. He started to become very tired, would sleep all the time, and then we were in the Royal when he took an unresponsive episode.
"His heart rate would go dangerously low, his oxygen would go dangerously low, and his eyes would roll. They'd never seen anything like this before. He went onto a C-PAP machine (continuous positive airway pressure) and sleep studies were done. Everything went pear-shaped from that."
She continued: "He was brought in in November to get an EEG (electroencephalogram) done over 72 hours where they discovered he had a condition called encephalopathy which is the brain slowing everything down. They believed this was his condition then. I asked for a second opinion. Now, the Royal has been amazing. They have been outstanding, his whole care team, and they reached out to Great Ormond Street Hospital (in London).
"Great Ormond Street gave him the official diagnosis of ROHHAD (rapid-onset obesity with hypothalamic dysregulation, hypoventilation, and autonomic dysregulation) - he's the only person on the island of Ireland to have this diagnosis. He's the third in the world to have ROHHAD with encephalopathy.
"It's extremely rare. His brain is not telling his body to work - his stomach doesn't work, his bowels have stopped working, he's now on a catheter. It's the brain shutting down the body, slowly. There's no treatment and no cure for ROHHAD."
Since his diagnosis six months ago, the family had what Catriona described as a "terminal talk".
"We knew where we were going with it, and two weeks ago he became palliative. There's been a fast, clinical deterioration over the last six weeks. We were in the Royal and on the Friday two weeks ago, he was very, very ill and it was my wish to have Caoimhin home to pass away with his brothers and sisters and Daddy, all of us together."
The youngest in a family of six, Caoimhin will see out his final days surrounded by the love and care of his two older brothers, his older sister and his mother and father.
"I can't explain the love and the care my three children have had for Caoimhin over his eight years of life," Catriona said. "It's heartwarming. The closeness is unreal and they are struggling, naturally. They're kids and I'm an adult and I struggle to understand what's went wrong.
"He is a very special child, and he was always a special child. He was sick as a baby but he never let anything stop him. When he was born they told me that he wouldn't walk, or he wouldn't eat, or he wouldn't do any of that - and he outdone all of it. One of my other sons said to me the other day 'mummy he outdone all the other stuff, why can't he outdo this?' They can't understand.
"We got him home on the Friday, two weeks ago, and his care has become 24 hours, round the clock. We're doing it ourselves. I am his Mummy and I'm here to make sure he's okay. I want to be able to say I've done everything for him."
The local community in Belfast has rallied to the family's side with several businesses also pledging their support. A 'fun day' will be organised for Caoimhin at his home in Newtobabbey.
"We had a couple of lovely events before Caoimhin went downhill a few weeks ago," Catriona said.
"Belfast City Airport put on a fabulous day where he was known as 'Captain Caoimhin'. He got dressed up as a pilot, and he got to meet the pilots and the cabin crew, and to pretend to drive the airplane. He went to the airport fire station and got dressed up as a fireman, and got to do all the water things as on the fire engine. That was the most special day we've had so far. And they done it from the heart, it wasn't for the publicity. Kingsbridge foundation sent us to Longford centreparks for two days. It's a private hospital. They contacted me and said that because Caoimhin had made history they would like to fund the family for us to go away as a family for a few days. Fonacab paid for the six of us to go down to Longford. They've all been unbelievable."
She added: "The fun day came about because a child who spent Christmas with us in the hospital came to see Caoimhin yesterday. Caoimhin hasn't interacted much, but he interacted with that child - wee George. It was when George left that I thought we should throw him a party. We know Caoimhin's days are limited now, but we can have a party in the house so that if anything is to go wrong all the equipment is there.
"Now, Caoimhin is bedridden so we're hoping to get a wheelchair seat for him. I contacted my friend who also had her son pass away and she put a post up on social media about it. We have been inundated by so much kindness. I lived in Glengormley and we're only here in this area for a year now, we're living in a house that was built especially for Caoimhin, and I can tell you the community spirit in this area (Banwnmore) is absolutely amazing. The people are so friendly."
The family fun day is set to feature a chippy van, a crepe van, tables, mascots, marquee, photography, entertainment such as face painting, clowns, and puppets, cake, a party bus, balloons and banners. It is scheduled for July 8, between 2 and 5pm.
Donations for the family fun day can be made via paypal at teamdotpresents@hotmail.com
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