James O'Dea pictured with Joss Stone
First class student James O’Dea who attends Kilkenny Model School recently met with English soul and R&B singer-songwriter Joss Stone.
The singer took time out from her busy schedule while in Ireland touring and recording a collaboration with Irish singer Ryan Sheridan to meet with Cystinosis Ireland, an organisation which raises awareness about the rare genetic condition, Cystinosis.
Joss who shot to fame with her hits “Right to be Wrong” and “You Had Me” was in Dublin to promote the release of her new album “Project Mama Earth. The singer will be highlighting the work of little known charities that do amazing work within the cities which she is performing. The work of Cystinosis Ireland will feature in a short video which will be shared on Joss’ YouTube channel which has almost 2 million followers.
James O’Dea (7) was diagnosed with Cystinosis almost four years ago and is one of only 15 people, 10 children and 5 adults, in Ireland affected by the challenging life-long condition.
He spoke with Joss about his demanding medication regime which includes taking tablets every six hours, every day and being woken up at night time to take his medication. He swallows up to 30 tablets every day. There are many complicated and unpredictable side effects to the condition that James also lives with day to day.
“Cystinosis is a relatively unknown disease, the parents of those affected and those with the condition, face many challenges. Not least in terms of raising awareness about the condition. While there is currently no cure for Cystinosis, it is manageable day-to-day through the administration of vast amounts of medication.
New medical developments and research projects, show great hope that a cure is possible. However, we need the backing of the wider public, to show their willingness to support Rare Disease groups such as Cystinosis Ireland.” says Bridget O’Dea, mum to James and Client Manager with Purcell Masterson PR and Communications.
Cystinosis is described as a Cystinosis is a rare, degenerative, inherited disease in which the amino acid, cystine, accumulates abnormally in all cells of the body due to a defective mechanism to transport it out of the cells. This in turn leads to early cell death, slowly destroying all the organs of the body. Renal transplantation is inevitable for those affected.
Cystinosis Ireland is a not for profit, volunteer led charity. Absolutely all proceeds raised go directly towards funding research, which it is hoped will someday lead to a cure.
For more information, see www.cystinosisireland.ie