A County Antrim family have appealed to the community for help as they endeavour to raise £50,000 to fund treatment in the United States for their young son who suffers from a life-limiting condition.
Leona and Art Connolly’s 14-year-old son, Criostái, the couple’s youngest child of four, was diagnosed with Duchenne Muscular Dystrophy (DMD) in 2013 at five years of age.
DMD is a serious muscle wasting condition that effects every muscle in the body, including heart lungs and brain, and tragically, there is currently no cure. Treatments are very limited and for those who suffer from the condition life expectancy is late teens to early 20’s.
Speaking to Love Ballymena, Mum Leona shared how the condition has impacted young Criostái and has been a painful and difficult challenge for the family.
“To learn this about your precious child is absolutely devastating as you can imagine,” she said. “Over the last nine years it has been very difficult as we watched Criostái deteriorate.
“Criostái lost the ability to walk at nine years old and slowly his upper body has gotten significantly weaker. He is a full time wheelchair user now and dependent on us for all his needs.
“The last few years have been tough for us as a family to watch his struggle with small tasks - even brushing his teeth or using his remote control has been heartbreaking.”
But after searching relentlessly for help over a number of years, the family who live in Magherahoney (between the villages of Loughgiel and Armoy), finally stumbled upon a treatment in America that have offered them hope.
Leona explained:
“In August last year, we totally by accident saw another family on Facebook whose son has the same condition and was receiving treatment in America. So I decided to contact them and couldn’t believe it when they said they could help us.
“The Pentony family from Newry had already set up a charity for their son Alfie (Fight For Alfie), and they told us about the treatment and how much improvement their son had made. So we decided it was something we had to do for our son.”
The treatment offered hope for Criostái, but based in the United States, the family would have to travel across the Atlantic every 12 weeks, with an approximate cost of £12,000 per trip.
Since the discovery, Leona and Art have taken Criostái for the treatment twice already, and the signs are promising. Leona said:
“The results so far have been amazing. Criostái’s strength has improved by 45% and he is responding very well. This is working and it is giving our son a real fighting chance!”
After seeing such positive results from the treatment, the family are determined to continue with the plan for the next year “in the hope that something becomes more readily available closer to home”.
Leona concluded:
“Criostái is now 14-years-old and he really is the most amazing wee boy. He has such a wicked sense of humour and loves life. Please help us save our boy.”
If you would like to make a donation to help the family to raise £50,000 Criostái’s treatment, please visit the secure online giving page via the donate button below.
You can also keep up to date with Criostái’s journey by visiting his Facebook page via the button below.
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