Glossop family raise money for portable defibrillator in their home
It's after they were given one to allow their 11-year-old daughter with a rare, potentially, fatal heart condition, to go on her school leaver's trip
Last updated 30th Jul 2023
On Friday 14th July charity, Lagan’s Foundation provided a portable defibrillator to allow Ellie-May O’Connor to go on her end of primary school trip to the Lake District.
Lagan’s Foundation took on the Defibrillators for Families project from Hand on Heart when the charity closed during Covid.
The project provides portable defibrillators to children in the Northwest who need this piece of lifesaving equipment and are stuck in hospital, unable to go home for personal holidays, trips or permanently.
The O’Connor’s were referred to Lagan’s Foundation by nurse, Rosie Fawcett, at Manchester Children’s Hospital, to help provide a defibrillator short-term to allow their 11-year-old daughter Ellie-May to take part in her Year 6 end of primary school trip to the Lake District.
Ellie-May’s parents said; “Our beautiful girl, Ellie-May, is a seemingly happy, healthy, 11 year old - however what most people do not know is that Ellie-May has a rare heart condition which in the shear reality of it could be fatal!
“Ellie-May was genetically tested at birth for the condition CPVT (type 1) which, her dad Sean has got. It was confirmed within the first 6 weeks of her life that she had the condition! We were invited to the hospital and began attending cardiology appointments which Ellie-May will attend for the rest of her life!
“We have since approached Lagan’s Foundation, they have been wonderful and have already said they will provide our girl with a DEFIB that she can take on her school trip (so that she can go and still enjoy her time with her friends).”
In short CPVT is a rare inherited heart rhythm disturbance and often first appears in childhood and young people. It usually happens when someone is under physical or emotional stress and can trigger an abnormally fast heartbeat which can lead to fainting, cardiac arrest and devastatingly sudden death!
Due to the seriousness of Ellie-May’s condition and symptoms the O’Connor’s have been advised to have a portable defibrillator at home, should anything happen.
“We love our daughter with all our hearts and we are trying to be proactive and as prepared as we can, we cannot bear to think what else we would do!”
The O’Connor’s have now fundraised over £2000 for a permanent defibrillator at home through the Defib’s for Families Project.