The family of a 20 month-old Donegal toddler who has an incurable life-limiting condition has been delighted with the response that they have got for a series of fundraising events.
Little Leah McGeehan (pictured) lives in Fintown with her parents Brenda and Brendan, and big brother Aidan.
Leah has a mitochondrial condition which unfortunately is a devastating diagnosis for any family to receive for their child. It is incurable and life limiting.
Her short journey of life so far has been hugely tough and demanding on Leah and her family.
As mum Brenda recalls: “When I was 35 weeks pregnant our lives changed when we were giving the devastating news after a fetal assessment in Letterkenny General Hospital that all was not well with our unborn baby. The scan showed extra fluid around our unborn child’s brain.”
They were referred to the National Maternity Hospital in Dublin for further tests. The outlook wasn’t good.
A date was arranged for April 15th 2013 for the baby to delivered by caesarean.
“Leaving our then 3 ½ year old Aidan was heart-breaking and we were expecting to be in Dublin for weeks or months if the baby was to survive, Brenda says.
“Just after midday I was taken to theatre and our princess Leah was born at 1.26p.m. on April 15th. She did everything she wasn’t expected to do, she breathed, she took her feed, she cried etc. She was taken to the neo – natal unit and held her own. We got the brilliant news that we would be discharged that Friday. She was taken to Temple Street that day for an MRI and we headed for home.”
Two weeks later we got the MRI results from Leah’s consultant in Letterkenny - it wasn’t the result they had hoped for.
A week later they were told she had very little hearing, but to wait as it might develop.
“All we could do for the next few months was wait and see, but deep down in my heart I knew Leah was going to have a lot of challenges ahead,” Brenda adds.
“After numerous trips to Dublin we were referred to the metabolic team in Temple Street, and it was arranged for us to come into the hospital to have a series of test over a few days. “So in December 2013 she was called in for the tests, once we got settled on the ward, one of the Doctor’s said to me ‘you are aware that Leah has a lot of markers for a mitochondrial disorder.’"
Brenda continues: “When I asked her to repeat the name of the condition she told me not to google it!
“Of course I couldn’t wait to get her out the door to google it and I cried when I read about the prognosis. We were told we would have to wait for a few months for the results which would be from a skin biopsy that they took of Leah."
“As the months went by I knew things were going to be tough, Leah wasn’t meeting her milestones and interacting. She was diagnosed in January 2013 with Cortical Visual Impairment that meant she didn’t smile until she was 10 months. When she eventually did we were on top of the world.”
Leah was finally confirmed as a mitochondrial patient in June 2014; the type she has is pyruvate dehydrogenase complex deficiency.
Mitochondrial disease is a metabolic disorder that prohibits cells from producing the energy needed for organs, and the body overall, to effectively function.
As Brenda explains: “We were told it was a life limiting condition and not much else. Walking down O’Connell Street that day my head was spinning. So it was life as normal again not really knowing much about this horrific diagnosis. It wasn’t until I joined a facebook page of the condition I found out the real extent of the condition and over time when I met up with other mothers of kids with mitochondrial.
in December five children in Donegal had been diagnosed with mitochondrial.
“Sadly, one of these special kids passed away suddenly, little Katie Rodgers, which was a heart-breaking.
“In recent times Leah’s hospital stays have become more frequent. It is not as easy to take her out especially during the winter months as we are so afraid of her becoming sick etc., therefore the support we get from the Jack and Jill Foundation means we can have a normal as possible life for Aidan’s sake.”
Now with the help of friends Brenda and Brendan McGeehan have decided to give something back to the Jack and Jill Foundation and the Children’s ward at LGH as Jack and Jill provide them with a carer to do normal things with Aidan or even just to go and get the grocery shopping.
“We want to give something back to LGH for the great care and support we receive on each admission. I feel most families in Co Donegal will encounter a stay in Letterkenny General Hospital when they have kids.
“Our aim is to buy something for the ward that will make things a little more comfortable for patients and parents for when their kids are in hospital.”
The Jack & Jill Foundation is totally dependent on fundraising and the support it provides to families is second in to none.
“At present Leah is doing relatively well and is a content happy wee lady,” Brenda says, adding: “We would like to thank anyone who has helped out in any shape or form for this fundraising.”
See this week's Letterkenny Post and Donegal Post for more. In our gallery section is a photo of Leah at her first birthday with parents Brendan and Brenda and brother Aidan.
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