‘Happy, smiley’ teen is the face of Tŷ Hafan appeal
A “HAPPY, smiley and flirty’ 13-year-old has been announced as the face of this year’s Tŷ Hafan Christmas appeal.
Marshall Dale lives with the very rare Sanfilippo syndrome, a condition where the body is missing an enzyme that is used to breakdown waste from carbohydrates, said his mum Susan John.
Despite being a happy, healthy baby, doctors first realised something wasn’t right when Marshall was admitted to hospital aged six months with a high temperature and a chesty cough, where he was diagnosed with pneumonia.
But it was only when his mum went home to rest and get a change of clothes after spending a few days in hospital that nurses bathing baby Marshall discovered a curvature at the bottom of his spine.
The following morning the doctor did various tests with Marshall, which included moving a pen in front of his face, and found he wasn’t following. The doctor said his development was delayed for his age and sent Marshall for further examination.
Susan said: “I think at that point he knew what he was looking for, he must have seen it before.
“We had a phone call two weeks later to give us the diagnosis but we had never heard of the condition.
“A few days later we went in to see the consultant where he explained what it was and what would happen and he explained Marshall’s prognosis.
“He said that people with this condition live to their early teenage years but often end up with dementia and seizures.”
Susan added: “It didn’t sink in. I could hear what he was saying but looking at a six-month-old baby in my arms you couldn’t just connect the two.
“I think it’s taken some time to actually sink in. And now as Marshall is getting older and I’m seeing the changes in him I know it’s happening and there’s nothing I can do to change it.”
Susan is a single parent and also a full-time carer for Marshall, who attends Heronsbridge special needs school which he loves, as well as spending time with his friends.
Because of Marshall’s condition he sometimes doesn’t sleep through the night, which can have a knock-on effect on the whole family.
Susan said: “Obviously when you’re tired you feel the sadness more and it can be very stressful and upsetting, but it’s much easier through term time while he’s in school.
“Tŷ Hafan came into our life after a half-term crisis when Marshall was about nine or 10, he was screaming non stop, doing a really high pitched scream on a loop. He would have a few seconds break and then he would go again. He was barely sleeping, and neither were we.
“On the Monday when I was dropping off Marshall to school I think they could just see it in my face, I think the exhaustion just showed. You can cope with it a lot more if you’re not exhausted.”
The mum-of-two was encouraged to ring Tŷ Hafan for support but when she called she said she couldn’t find any words, and just started crying and couldn’t stop. The support workers arrived within the hour and got Marshall in for a crisis visit less than a week later.
Over the last few months Marshall’s health has deteriorated quite quickly and he is now non-weight bearing after losing his walking ability. Previously, he had been able to take a few steps.
Susan said: “After the really hot weather in July he wouldn’t eat or drink, he’s now tube-fed which is really sad because he loves his food.”
The family were asked by Tŷ Hafan to be a part of their 2021 Christmas campaign, and they were delighted to be considered.
Susan said: “I am happy that we were asked to be a part of the campaign. They have helped us so much over the years that it feels good to help them back and hopefully this will help other families who are going through similar struggles.
Tŷ Hafan is one of two children’s hospices in Wales. Its services are free and available to families throughout Wales.
The hospice supports around 271 families a year and focuses on quality of life rather than end of life, and is focused on making a short life a full life.
Phae Jones, director of income generation at Tŷ Hafan, said: “We want to thank Marshall and Susan for being the faces of Tŷ Hafan’s Christmas Appeal. Every year Tŷ Hafan provides care and support for almost 300 children with life-limiting illnesses and their families across South and Mid Wales and it costs £4.5m annually to do so.
“Every donation, no matter how large or small, makes a difference to what we can do for children with lifelimiting conditions in Wales like Marshall.
“Marshall always loves it at Tŷ Hafan. He is always happy there. He loves the people. He loves the change in environment. He enjoys activities now, but he does fall asleep a lot. He tires out quite quickly.
“Tŷ Hafan is a lifeline. People need it.
“I can’t imagine what it would be like without Tŷ Hafan in our lives.”