Family to walk from Prairie pub in Burnley up Pendle Hill to raise awareness of baby son's rare condition that affects only one million people worldwide
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Jonah Holt has Tuberous Sclerosis Complex (TSC) a rare genetic disease that causes non-cancerous (benign) tumors to grow in the brain and several areas of the body, including the spinal cord, nerves, eyes, lung, heart, kidneys.
The news was devastating for Jonah’s parents, Laura and Aaron, who had no idea anything was wrong with their beautiful little boy until he started having seizures. Jonah, who turns one at the end of this month, was admitted to hospital where he underwent several tests and an MRI scan revealed multiple tumours on his brain, which led to the diagnosis.
Laura said: “As parents all you want is for your children to be healthy, and nothing can prepare you for being told that's not the case.”
Issues caused by TSC are as a result of the tumours can include epilepsy, which Jonah has and now takes regular medication to control. It can also cause kidney problems,mental impairment and physical disability.
Laura added: “The effects of TSC can vary considerably from person to person, and we simply have no idea how severely Jonah will be affected in the future.
“All we can do for him as parents is stay positive, give him the best quality of life and above all, keep our cheeky boy smiling.
“He is such a happy and active boy and is already trying to pull himself up on the sofa to start walking. You really wouldn’t know that anything was wrong with him, he is such a bundle of energy and a happy. smiley boy.”
The couple, who also have a three-and-a-half-year-old daughter Ruby, are planning to do a sponsored walk from the Prairie pub in Burnley to the top of Pendle Hill and back. The event takes place on Sunday, November 26th, and they have already smashed the £1,000 target by £60.
Friends and family will join the couple for the walk and the money will be donated to the Tuberous Sclerosis Association which provides much needed support for those affected by TSC and funds vital research into finding a cure. To make a donation please click HERE.