Spin Spin Spin! 8-Hour Spinathon Raises £1137.80 for 22Q11 Northern Ireland!
On Saturday 26th January, the Waite’s team along with some fab (and brave) gym members, hopped on spin bikes at Asda Ballyclare to take part in an 8-hour spinathon in aid of 22Q11 Northern Ireland and raised an amazing £1137.80!
This charity is close to our hearts at Waite's Gym as it provides support to one of our members, Louise Montgomery and her 3-year-old daughter, Thea. Little Thea was diagnosed with 22Q11 syndrome one week after she was born.
The charity raises awareness of the syndrome and supports local families who are affected. 22Q11 is a genetic syndrome and is the 2nd most common after down syndrome. It occurs when there are pieces of missing genetic material on the 22nd chromosome. Those who have been diagnosed will have a number of issues from close to 200 symptoms including heart defects, cleft palate issues, seizures, Autistic spectrum disorders, weak or no immune system and mental health disorders.
Commenting on the fundraising initiative, Louise said: “We had no idea about any of Thea’s conditions before she was born. We found out a day after birth that she had a major heart defect-Tetralogy of Fallot-and was seriously ill.
“A week later we received another blow when we were told that she also had a genetic condition, 22Q11 deletion syndrome. Consultants were unable to tell us the outcome of these and we just had to wait and see.
“Thea needed tube fed for a year and a half and due to her weak immune system had many hospital admissions. She had major open heart surgery in London at nine-months old. We are currently waiting on her having a heart valve replacement also. Along with her heart defect, which means she gets very tired easily, Thea also has a cleft palate and loss of hearing (both of which will require surgery), a weak immune system, hyper-mobility, low muscle tone, chronic constipation, speech delay, developmental delay and behavioural issues.
“She also has facial features that are common with her syndrome, and although she looks like a ‘normal’ little girl, faces many challenges on a daily basis.”
Louise added: “22q11 Northern Ireland have been a lifeline to us in answering many questions over the past almost three years. They do not receive the funding or support that they so desperately require in order to help more families.
“They have been especially helpful to us over the past few months dealing with behavioural issues, forms and applying for nursery- all of which is a minefield with a special needs child.
“We were totally devastated when Thea received her initial diagnosis but through the help, advice and support of the charity we have worked through this and now manage her symptoms as best we can-she is a little miracle and a total diva and we wouldn’t change her for the world.”
We would like to say a huge thanks to the generous people of Ballyclare for supporting our fundraising (and cycling) efforts - your generosity will allow the charity to keep helping families including Louise and Thea!
If you would like to find out more information about the syndrome or would like to help raise money for this fantastic charity, check out their website 22q11northernireland.co.uk or contact Gillian Cassidy at firstname.lastname@example.org.