Derry baby with 1 in 15 million condition receives donation from local fundraiser organised by bereaved family

Martin Gallagher was just 25 years old when he was struck by a drunk driver in 2009.

He was found dead on Halloween night after being struck in a hit and run.

Martin was an avid marathon runner and so in his memory, Foyle Valley Running Club- whom he was a member of- run in memory of Martin every year to fundraise for local causes.

They held their first fundraising run in November of 2010 and ordered a couple hundred t-shirts but had to order many more due to the incredible turn out.

The run has been growing from strength to strength every year and is now one of the largest independent fundraising runs in Northern Ireland.

This year's run, held on October 9, raised £3000 and the Gallagher family decided to donate the £1000 of the money to a Derry family who are currently caring for their baby girl with a condition so rare it affects 1 in 15.4 million people. The remaining £2000 has been donated to other local causes. 

Baby Aoife, born in May this year, suffers from Pallister Killian syndrome and is the only known diagnosis in the entire country. 

Baby Aoife has received  and still receives outstanding care from a wide range of specialist health care professionals between Derry and Belfast who have been so kind and look after Aoife and the  whole family so well. Gary and Joanne  are very thankful and appreciative for all their skill, expertise and knowledge - they  would be in a very different place without their help and care. 

Pallister-Killian syndrome is a multi-system disorder that is characterised by extremely weak muscle tone, intellectual disability, distinctive facial features, sparse hair, areas of unusual skin coloring, and other birth defects.

Aoife requires full time care as she is on oxygen therapy, on a monitor continuously and has many appointments to attend.

Aoife's father, Gary, said everyone in the city is so supportive, offering their time and help any way they can and says the family can't thank the Gallagher family enough for donating the money raised to help their baby girl.

"It has been a hard six months," the father of three said. "She has been through so much, she is so small and it is hard not knowing more about her condition.

"She was diagnosed at three weeks old. It is a genetic condition affecting Chromosome 12 but is not hereditary. The syndrome happens randomly and for no known reason.

"Aoife is living with a condition most specialists in Northern Ireland have never encountered. One nurse had heard of it after helping a family in Nottingham but there are only 12 people known to have this condition in the UK."

Baby Aoife is on 24 hour oxygen and she requires a feeding tube. A lot is unknown about her condition but her mum and dad are so chuffed with Aoife's journey so far. Aoife is a very special baby girl and has shown so much strength beyond expectations, they are very proud of her. 

"We will have to wait and see how the syndrome will affect Aoife as no two babies with this condition are affected the same way. It is just a case of as she grows, we will know more. 

"We are learning day to day. We are constantly attending appointments as she undergoes procedures and tests.

"It takes a village. Everyone's support is fantastic, I can't speak highly enough of everyone. 

"Aoife's condition was a shock to hear, however there are always other families in more difficult situations than us; we've seen it first hand.  

"We as a family take each day as it comes in the hope that Aoife becomes stronger. Nothing is set in stone as the condition is just so rare however as her family we continue to hope and pray and enjoy spending every minute with Aoife and her big brothers."

Gary and mum, Joanne, say Aoife has come through so much and has come on so well, "She is a very happy and content little baby who loves to have lots of attention and fun," they said. "We are very lucky that Aoife is getting bigger and stronger and her big smile can always light up the room.

"Aoife has had a rough time but she is definitely a warrior, she is a wee fighter."

When the Gallagher family heard about baby Aoife and her story, they instantly decided they wanted to donate a portion of the money raised to support the Carlin family.

They have since presented the cheque to the Carlin family and wanted to thank everyone who donated to help such a brave little girl and her loved ones.

Martin Snr., Martin's father said: "The money raised is going to such a worthy cause. The Gallagher family would like to thank all members who organise the run every year. 

"We would also like to thank all the sponsors including our main sponsors, Paul's butchers, and most of all, the people that turn out every year. It is great for us as a family to see so many out in memory of Martin."