As parents of two healthy and happy little girls, Kathleen and Sean McCallion from Creggan had no reason to think that their third child would be any different.
But when they attended Altnagelvin Hospital for Kathleen’s foetal anomaly scan the bottom fell out of their world - with the devastating news that their youngest daughter, Seanain, was most likely to have spina bifida and showed signs of having brain abnormalities.
“Everything had been fine with my pregnancy - we weren’t expecting to receive news like this. I didn’t know very much about spina bifida - I thought it was associated with being an older mum.
“But I remember we were told the news and told that we would be referred to Belfast. I was told not to Google it - and I didn’t, but it was a terrifying time. I think I cried for two days.”
Just days later the diagnosis was confirmed. Along with Spina Bifida, baby Seanain also had gut dysmotility and Chiari Malformation type 2, which puts extra pressure on her brain.
As the rest of Kathleen’s pregnancy progressed she was seen every week by the specialists in the Royal. “We kept being told the worst case scenario - which I understand - but it was hard to get your head around it.”
Due to the complex nature of Seanain’s condition, she was delivered by C-Section in Belfast and when she was just one day old she underwent the first of many surgeries on her spine. When she was ten days old, her first shunt was inserted to drain the excess fluid from her brain.
The tot spent three and a half months in hospital after she was born - with Kathleen and her husband torn between Belfast and their baby and Derry and their older daughters Chloe (5) and Grace (8).
Seanain is now just over two years old - and requires 24 hour care. She is paralysed from the waist down, requires oxygen, has to be catheterised eight times a day and is tube fed. She will never be able to eat normally - and any attempt to do so could kill her.
Seanain was given her first wheelchair when she was just a year and a half old - and has no bother at all in pushing herself where she wants to go.
She has undergone 12 surgeries to help manage her condition and has been hospitalised between 70 and 80 times but in many other respects she is just any two year old toddler - full of mischief with a burgeoning personality.
She loves to watch Barney, play with her mammy’s phone and will give you a big cheesy grin if you ask really nicely.
“She could buy and sell you,” Kathleen laughed adding that she hopes her daughter will be able to start mainstream education within the next year at nursery level and then go on to follow her big sisters to St. Eithne’s Primary School.
“I don’t want her wheelchair holding her back, or her feeding problems holding her back.
“I want her to experience as much of what her sisters experience as possible.”
Kathleen decided to speak out about Seanain’s condition to highlight the work of local charity Shine - and the Northern Ireland Rare Disease Partnership.
“You can feel isolated and you can feel alone. There are tough decisions to be made at times.
“We have to think everything through and talk everything through to try and make the best decisions to Seanain. It is very emotional - there have been tough times, but we get through it. We have to. And we know we are lucky to have her.
“Shine, and Sandra Campbell, have been brilliant in being there - on the other end of the phone when we need them - no matter what for.
Anyone who would like more information on the work of NI RDP or who needs support / signposting to a specific Rare Disease organisation can contact Sandra Campbell on 02871 359900 / 07742 683008 / or firstname.lastname@example.org