Hunter Farah was diagnosed with Williams Syndrome, which has meant his aorta is narrowing and he needs life-saving heart surgery; the Benoni community have rallied to support him and his family through this time.
South Africa (03 August 2023) – Hayley Fekete Farah has a reputation for doing good in her community so when they heard her son had been diagnosed with a rare disease and needed heart surgery, the Benoni community rallied to support her.
According to the community, it is agreed that Hayley is known as the Mother Theresa of Benoni. She works hard to help others and has done so time and time again over the years. It is said that whether it may be an individual in need or a charity, she rallies the community and gets the job done.
Now, since her son Hunter’s diagnosis, she has needed the support and the community has jumped at the opportunity to give back to this supermom!
Her son Hunter, who is currently 5 years old, has a rare disease called Williams Syndrome. The disease is taking its toll on his heart and he needs to have specialised heart surgery to correct the narrowing of his aorta. He has had to undergo numerous tests and evaluations to find out what has been happening in his tiny body. Some of the testing has meant he needs to undergo anaesthesia, which puts him at great risk due to his Williams Syndrome.
Williams syndrome is a genetic disorder that is caused by having 26-28 genes missing from chromosome 7. Williams syndrome is a rare condition that happens in 1 in 7500-10 000 births. It is a developmental disorder that affects many parts of the body and can be characterised by:
- mild to moderate intellectual disability or learning problems,
- unique personality characteristics,
- distinctive facial features,
- and heart and blood vessel (cardiovascular) problems.
In Hunter’s case, he has developed a cardiovascular disease that is common in children with Williams Syndrome. It is called supravalvular aortic stenosis (SVAS).
Supravalvular aortic stenosis is a narrowing of the large blood vessel that carries blood from the heart to the rest of the body (the aorta). If this condition is not treated, the aortic narrowing can lead to shortness of breath, chest pain, and heart failure. In Hunter’s case, recent measurements show his aorta has narrowed to 6.6mm, which is the equivalent of a newborn baby’s aorta.
He has been booked in for surgery on the 7th of August 2023, to help combat this narrowing as soon as possible. At present, they are not able to detect his blood pressure within his heart value due to the severe narrowing.
His doctors will be performing a Broms three-patch Aoroplasty for Supravalvar Aortic Stenosis and once completed, Hunter will have to remain in ICU for a longer than usual period for monitoring.
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Hayley had merely asked for prayers but the community decided to put together a crowdfund which will raise R15,000 to help pay the excess for the scans and tests Hunter needs. Any additional funds raised will go to the other excess medical bills that the family’s medical aid may not cover. You can support the family via BackaBuddy here.
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