A SOMERSET Park couple say they’ve been blown away by the generosity of strangers, as well as family and friends, in support of their eight month old daughter Alyssa Cas.

A BackaBuddy page has been set up for first-time parents Trysten and Jade Aldworth to help Alyssa, who was recently diagnosed with Mucopolysarcharidosis (MPS I) or as it is also known, Hurler Syndrome, a rare and serious genetic disorder.

Alyssa, who was born in September last year, was diagnosed at the end of March and Trysten explained how the young couple has dealt with the news.

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“It wasn’t easy being given the news and for any parent to hear that is incredibly tough. We are trying to do the best for Alyssa and we have to stay strong for her. Jade and I have been together for 13 years and married for five so we have a strong bond. We try not to talk about anything in front of her – even though she can’t comprehend what’s going on we try and keep her free of any negativity.

“With MPS I, it is a neurological disease and it affects the brain, joints, ears, heart and lungs. There have been very few studies done, but because the disorder is very rare, the median life expectancy is six to eight years. But everyone is different and we’ve fortunately found the diagnosis early so we are looking at Haematopoietic Stem Cell Transplantation (HSET) which is an avenue we are exploring,” he said.

Trysten added that despite the odds stacked against her, Alyssa is a cheery baby.

“She is literally our bundle of joy. You’ll always find her smiling and she’ll go to anyone with a smile. She is chatty too and is always wanting to be on the move. She loves her evening walks we do everyday. She also loves being tickled and her laugh is so infectious that you can’t help but laugh yourself,” he said.

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Speaking on Alyssa’s middle name, Trysten said it was unique and a way to honour her grandfather.

“We ran through a few names on our list and settled on Alyssa. With her middle name we wanted to honour Jade’s late father who passed away recently and his name was Craig Andrew Suttie, hence her unique middle name of Cas. Both Jade and my middle names also start with the letters C and S so we felt it was a perfect fit for her,” he said.
So far, more than R222 000 has been raised for baby Alyssa’s treatment.

“My wife and I are just two regular people and we are struck by the generosity of people being so giving. My wife’s boss Kim set up the page and the amount of love we’ve got from people all over the world is mind-blowing. It is unreal to experience,” Trysten said.

If you would like to support the couple and baby Alyssa, visit the BackaBuddy page.

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