Jenny McCully Ryan, her husband Jamie Ryan and their children Kian, Keeley & Darragh from Monard in Co Tipperary had their whole lives turned upside down just over a year ago in February 2020. Their youngest son Darragh aged 4 at the time, suddenly fell tragically ill.
In February 2020, Darragh was a perfectly healthy, energetic, and fun-loving little boy who loved playing with his cars and whose favourite Marvel Superhero’s are Spiderman & the Joker. Darragh attended preschool as normal and loved all the interaction and playtime with his peers. Life was so good.
Without warning, Darragh suddenly started having seizures. Darragh attended various and numerous hospitals to try and understand the cause and stop these seizures. Initially Darragh was treated for Epilepsy but critically none of the medications were working and Darragh began to deteriorate rapidly. Darragh attended Temple Street Hospital in Dublin in March 2020 in a further attempt to find the root cause of these seizures. Darragh bravely underwent numerous scans, EEG’s, Lumber Punctures and had a Plasmapheresis. His parents looked on in horror as their former fun loving boy had now lost his speech and could no longer walk. Nothing was working, his seizures continued and was deteriorating before their eyes. Eventually a muscle biopsy was ordered and further testing carried out in the UK.
In March 2020, Darragh returned home from Temple Street Hospital by ambulance to pass away at home. His life expectancy had now heartbreakingly been reduced to days. However, and against all the odds, Darragh bravely fought on and just like his own Marvel Superhero, Spiderman, he changed his own destiny. Darragh was not ready to go without a fight.
Darragh’s quality of life seemed to improve for the first 6 months after he returned home, the seizures stopped and he started to smile again, this meant everything to his parents.
On or about this time, Darragh’s family received the results of his muscle biopsy. It was the news that no family should ever have to hear. Darragh had been diagnosed with Mitochondrial Complex 1 Deficiency Disease which is an extremely rare disease with no cure. No two people diagnosed with this disease are the same, each differs with symptoms and life expectancy.
Darragh’s disease has now plateaued, however, the effects are devastating to his brain and muscles.
Darragh now relies solely on the care of his family and primarily his mother who has left her career as a self-employed hairdresser to give Darragh the urgent care he needs whilst also having to care for two other children. Jamie is working full time as a scaffolder in Limerick and is the main provider for the family. Darragh could not have asked for a better brother and sister to help care for him. Kian (13) and Keeley (10) show so much care and love for their little brother.
Darragh and his family reside in the ancestral family home that his mom grew up in. During the past year the roof of this home was badly damaged and needs to be replaced. The home also needs to be upgraded to be wheelchair accessible. A simple task like washing Darragh has now become a difficult and onerous task due to lack of accessibility throughout the house for Darragh’s wheelchair. Currently, the only access through to bedrooms and the bathroom is by lifting Darragh from his wheelchair and carrying him around corners due to the narrow doors and different levels of the house.
This would literally be life changing for Darragh and his family. It took Darragh’s family a long time to come to terms with the fact that they needed to ask for help and raise funds as they wished they could do this themselves but unfortunately they were not aware of the extent of the work that needed to be carried out to make the home wheelchair accessible to support Darragh and give him the quality of life he truly deserves.
These funds will go towards making their home wheelchair accessible but also for equipment, medications and treatments Darragh will require in the future.
Any donations no matter how big or small are greatly appreciated and will help them make these changes to suit Darragh’s needs.
Thank you all so much for reading our story,
Jamie, Jenny, Kian, Keeley and our Superhero Darragh x
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