A Dublin dad has appealed for help to bring his beloved seven-month-old daughter with a rare life-threatening condition home from the hospital.
Mikey Dillon and his wife Niamh had to give up their full-time jobs to look after their daughter Ella, who has been diagnosed with a number of conditions caused by a rare human gene called CTU2.
Ella is one of only ten people in the world who have the gene.
When Ella – who is currently in Temple Street Children’s Hospital – was born, she was taken to the NICU, where she spent the next two months unable to eat and being only fed fluids and formula through a nasogastric tube (NG tube).
Mikey and Niamh were also told that Ella had the Pierre Robin gene sequence, which is characterised by an underdeveloped jaw, backward displacement of the tongue, and upper airway obstruction.
Mikey and Niamh both now work part-time in a nursing home and a bookies respectively.
Mikey, who is from St Margaret’s in Coolock, told Dublin Live: “Her breathing didn’t improve – we thought she was going to die.
“They brought me in and said they thought she had the norovirus.
“She was unable to breathe, she was unable to eat. The only thing they could do was a tracheostomy.
“So they tried to do a tracheostomy but because of the Pierre Robin sequence her airway is half the size it should be.”
Now Ella is on a ventilator because of a flap in her throat that closes if there’s no constant supply of oxygen.
She had to undergo heart surgery to have a valve put into a hole in her heart.
Mikey added: “She wasn’t progressing at all.
“She had low set ears and high raised eyebrows and this all indicated that she had something but they didn’t know what it was.
“So we had to go get a genetic test done.”
The results said Ella had a rare human gene called CTU2, of which there have been only 10 known cases in the world.
Mikey said: “Another one is in South America and she’s 19 now.
“She’s severely disabled.
“The rest of them have passed away. They lived for a couple of hours or a couple of months.”
Mikey added: “There is also a day nurse and a night nurse that comes in to look after her.
“She’s one in 75 babies in Ireland with a tracheostomy and she’s one in 10 people in the whole world with the CTU2 syndrome.
“We don’t know her life expectancy. She’s been in hospital for nearly a year.”
Mikey said he hopes the fundraiser the family have started will bring in enough money to find a suitable home for Ella, so she can be with her family.
He said: “The house we’re staying in is Niamh’s mam’s house – but her house has just one spare room.
“So there’s me, Niamh, and our six-year-old son in one room and then Ella was supposed to be downstairs. We were going to make it for her but this is before Ella was born.
“Her room will need to have six sockets, it will need a wider door frame for all her medical machines. The house that we’re living in now is not suitable for that.
“I’ve tried everything and I’ve gone everywhere to get help. The GoFundMe was the only thing I could think of.
“We had built a little granny flat beside Niamh’s mam’s flat before Ella was born and it was fine and we were living in that.
“Worst-case scenario we could have brought Ella there in a Moses basket built because of her needs there’s no way we could do that.
“She has to have her own room, she has to be with a nurse, someone has to be with the baby 24/7.”
You can donate here to help Mikey and Niamh bring Ella home.
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