Funds raised to help people with 22Q11 Syndrome

Waite’s Gym in the town arranged a Spinathon and raffle at Asda Ballyclare on January 26 to collect money for local charity, 22Q11 Northern Ireland.

The charity raises awareness of the genetic condition and supports local families who are affected.

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.

The gym selected this charity to raise funds for as the three-year-old daughter of one of their members, Louise Montgomery, suffers from the condition.

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.”

In total, £1,137.80 was raised for the charity.

Thanking the public for supporting the fundraising effort, a spokesperson for the independent gym, which opened in 2016, said: “As well as helping people have a healthier lifestyle, we are also very passionate about giving back to the local community and using our position to raise money and awareness for causes close to our heart.”