BEING a mum at 18 can bring challenges – but those challenges can be overwhelming when your son has an extremely rare, incurable condition that doctors say is likely to limit his lifespan to a handful of years.

That was 18 years ago and despite the difficulties Tasha Anderson-Hunt says her son Cameron has enriched the family’s life immeasurably.

There was no help in this country for Tasha though and she’s set up a charity to support others who have had to deal with the very little known Zellweger Spectrum Disorder.

Cameron’s grandmother Tina Stilwell-Hunt from Bridport is helping and on August 6 is helping to put on an event in the Chapel in the Garden on East Street.

It is both a fundraiser and to raise awareness of Tasha’s charity, zellweger.org.uk, based in Chard.

Tina said: “Tasha started the charity up this year to help support families with Zellweger Spectrum Disorder in the UK and Ireland because up to now the only support available was from America.

“Little is known about Zellweger Spectrum Disorder.Specialists on the condition are few and far between. There are currently no effective treatments.

“My daughter Maxine wanted to do something to help her sister so started to arrange a coffee morning which quickly became much more and is now a awareness day with raffle, bric-a brac, hot dogs, children's lucky dip, tea, coffee, cakes and biscuits.

“We also intend to have live music at the event but have not managed to get a booking yet. So we’ve put out a plea for anyone who could donate an hour between 10am and 2pm on August 6 to play. Also any donations to the raffle prize will be gratefully received.”

Bridport and Lyme Regis News:

Tasha Anderson-Hunt with her son Cameron

Cameron and family will be at the event and some of the other families who live near enough will come depending on how well the children are that day, she said.

Offers of help to tina.stilwellhunt@yahoo.co.uk Tasha said: “I was just 18 years old when Cameron was born on the August 28, 1997 after an uneventful pregnancy. So when he was born with low muscle tone and struggling to regulate his temperature or feed properly, despite the paediatrician’s concerns, I presumed everything would be fine in a few weeks.

“It became clearer over his first year of life that this wasn’t the case as he failed to thrive. Various consultants started to point out several ‘oddities’ about him such as shortened limbs, small hands and facial ‘dysmorphia’.

“Eventually, a week after his first birthday and after months of tests, scans, bloods and fibroblasts, we were given the diagnosis of Peroxisomal Disorder on the Zellweger Spectrum and told that he wouldn’t live into adulthood; that he’d likely not live to see his sixth birthday.

“ The rest of the day was a bit of a haze as we waited around for an ophthalmology appointment; it barely registering as they told us he was all but blind.

“It wasn’t until a couple of months later when he was also diagnosed with adrenal insufficiency and started on steroids to correct this, that we started to see the feisty, robust little boy that would blow all of our expectations out of the water.

“He's 18 now and although he has recently developed seizures, he continues to thrive with his incredible strength of character. He's the guy who will find something to smile about, even on his worst days. He has the most incredible sense of humour and attitude to life. We're infinitely proud of our stubborn and strong boy. Regardless of his struggles and the incredible amount of suffering he’s had to endure over the years, he’s one of the lucky ones. Most children with ZSD don’t live to see their 18th birthday, many never even see their first.

“We are incredibly lucky. He's turned life upside down and brought true perspective to it.

"I've not always been the mum I wanted to be, I have many regrets and things that with hindsight I would have fought harder for/ let go of/ done differently, but we will keep fighting for him until the end… and beyond, in his name.”