Friday 23rd November Limerick companies Azpiral and Roselawn House hosted a coffee morning in aid of 22q11 Ireland, Azpiral’s chosen charity for 2018/2019 and later met with some of the 22q11 Ireland members to hear their stories.
22q11 Ireland is a support group for families living with 22q11 deletion syndrome, also known as DiGeorge syndrome or Velo-Cardio-Facial syndrome (VCFS).
Established 11 years ago the group now supports 160 families across Ireland. 22q11 deletion syndrome is the next most common syndrome after Down’s Syndrome but remains relatively unknown. It’s often described as the most common rare disease. The microdeletion on the 22nd chromosome is complex and variable, with over 180 potential symptoms. On average, individuals could experience between 20 – 30 symptoms, of which the most common are heart defects, immune issues, learning difficulties, and palate problems.
Azpiral has committed to supporting this parent-run organisation, to build awareness of the syndrome and raise much-needed funds. Azpiral and Roselawn House collaborated to kickstart the fundraising by hosting a coffee morning with special guest Liam MacCarthy along with two Limerick All-Ireland Hurling Champions, Doon’s Barry Murphy and Patrickswell’s, Diarmaid Byrnes.
Over €1,000 was raised and the atmosphere is the room was described as “electric” with loads of people taking photos with the cup and the players, drinking tea and munching on the delicious home-baked treats, while learning about 22q11 deletion syndrome.
Later that afternoon, 22q11 Ireland members, Aine, Emma, Niamh and Limerick woman, Amy, presented their experiences of living with 22q11 to Azpiral. An emotional, humorous and humbling experience for many at Azpiral. As the girls gave honest and real accounts of their lives. 22q11 Ireland’s initiative YEEP, “Young Experts by Experience Panel”, facilitated by Lorna Kerin, consultant researcher, is a forum which allows young adults, to socialise and have fun while doing ground-breaking research into the experience of living with 22q11.
When asked about what YEEP means to her, Aine said:
“I’ve learned to like myself and I’m more confident than ever, thanks to the YEEP programme”
After the presentation, Azpiral and Roselawn House representatives had the honor of presenting the girls with the cheque from the coffee morning earlier that day.