BiographyJordan had a complicated birth, but was healthy when he was born. He was reaching all his milestones and although he had severe reflux and colic, and sleeping issues, he was a happy baby.
At around fifteen months we noticed a regression. He stopped eating off a spoon stopped saying any words and had very repetitive behaviours. He was happy in his own environment, and preferred his own company. He was walking on his tiptoes and would become very obsessed with certain objects. By the age of four years he was still non-verbal and in nappies. This was when he was diagnosed with severe autism.
When Jordan was five years old, he came to live with his grandparents full-time.
At six years old he had his first Tonic/Clonic seizure and these became a regular occurrence. He developed other types of seizures as well and was diagnosed with Generalised Epilepsy. At this time his paediatrician was noticing differences with some of his traits and requested blood samples. He was then found to have a chromosome deletion – Phelan McDermid Syndrome. It's a very rare syndrome and there is only about 1400 reported cases in the world.
Jordan is now 12 years old, non verbal and still in nappies. He has recently had two Bilateral Tendon Release surgeries done on his legs as because of the toe walking, his ligaments and tendons were too tight and he could no longer stand or balance properly. He has also had a feeding tube put in as due to food sensitivities his diet was very restricted. This has made a big difference to his health as he had infections regularly.
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