which has benefited greatly from the help and support provided by the Jack & Jill Children’s Foundation, is urging people to support a fundraising car raffle in aid of the organisation.
Tickets for the new 191 RED Volkswagen five door Golf, which was donated by Sean Brett, the chief executive of Steeltech Sheds, will be on sale at the Galway Shopping Centre on Saturday. The money raised will be used by the foundation to provide home nursing care to very ill children nationwide. The draw will take place on St Valentine’s Day. Tickets, priced at €5 each or €20 for a book of five, are also available from www.jackandjill.ie or by telephoning its office on (045 ) 894538.
Joanne and Brian Geraghty from Oranmore credit the foundation with keeping their family strong. Their four-year-old son Caden has two very rare genetic syndromes. He has Jacobson’s syndrome (a deletion of Q11 ) together with another rare syndrome of a duplication of Q12. He is currently the only person in the world to have been diagnosed with both syndromes combined.
After a difficult birth, Caden was rushed to Dublin where he spent the first few months of his life in Our Lady’s Children’s Hospital in Crumin.
“Cadan wasn’t expected to survive at first but he kept fighting against all odds and thankfully managed to win his first battle,” says Joanne, a mother of three. “It soon became very evident that he had unusual features and symptoms. Genetic testing was carried out and the results confirmed that he has two extremely rare genetic syndromes. He also suffers from Polymicrogyria and under developed Corpus Collosum which again is very rare.”
He also has profound global development delay, he is non verbal, has extremely impaired vision, a shunt for hydrocephalus, is fed through a tube, and suffers from many medical complications. He requires 24 hour care.
“The Jack & Jill Foundation first came into our family when Cadan was almost five months old. We were just back in Galway and getting things organised to bring him home when the hospital contacted the foundation about Cadan receiving care from home. It was so hard at first to accept that we needed professional help from strangers to help care for our own child. It then started to become clear that we needed it, nights were long and hard and the days were even longer and harder (much harder than all the typical newborn issues that arise ). We were in and out of hospital and up and down to Dublin. Every day there was some new complication or something we had to learn. The Jack & Jill Foundation was not only providing Cadan with nursing care but they became our voices, our advocates.
“These last four years I don’t think our family would be as together as a whole as we are. Myself and Brian certainly wouldn’t be as mentally able and coping as we do. The nursing care provided by the Jack & Jill Foundation has given us something back that is so precious - time. We can use our monthly amount of hours as we wish. There are times that Cadan can have weeks of only needing two to three hours sleep in each 24 hour period. So, we are wrecked, going around like zombies, not able to function which is no good to anyone.”
The Geraghtys use this home respite care to sleep, spend time with their other children, do food shopping, housework, or attend appointments. “It gives us time to do all the simple daily things that everyone needs to do in life. The most important thing that we use this precious time for is to spend time with our older sons, Cian and Connor. It is heartbreaking that we cannot always go places together. We have three brilliant nurses who have really become part of our family. They enable us to arrange a specific few hours now and again so that we can take our other sons out of the house and do something.”
She says the Jack & Jill Foundation, which provides direct funding to families of children up to age five who suffer severe intellectual and physical developmental delay, enabling them to purchase home respite care, give the family breathing space.
“It the only bit of breathing space there is, the head space you need to think. Cadan has huge random vomits, multiple times a day so it’s very hard to take him anywhere. Friends, family, and neighbours are so helpful and kind, but unfortunately they cannot care for him. With a child like Cadan there is no break from it. I was never able to go back to work after having him. Cadan, of course, brings us so much love and joy, we are so grateful for how well he’s doing and how strong he is. But, often each day can be a new struggle.”