“Dylan was always a calm presence, and as first-time parents, it was the happiest time of our lives. We went up mountains, spent time in the ocean and drove around Australia. Life was so good. Looking back now, it just feels…innocent. We had no idea what was coming. But it was life-shattering. There is no other way to describe it.”
Will is dad to two sons, and husband to Sarah. Here, he shares his story of life with his very special boy, Dylan.
“When we think back to that time now, everything felt so simple, and we were truly having the time of our lives as first-time parents. We were enjoying life-changing adventures with our son, Dylan. We hired an RV and drove around Australia with him when he was only 6 months old. Perhaps we were naïve, but that’s the thing with Sandhoff disease, it doesn’t show any sign for several months.”
Up until that point Dylan was developing like any other baby, but slowly, his parents started to notice things weren’t right and he was losing some of his abilities: “We were having a nightmare weaning, and health visitors dismissively told us we just needed to try harder.”
Before the end of 2019, the family had absolutely no concept of rare diseases: “But as the pandemic started to take hold in early 2020, we were thrown into a world of referrals, tests and specialist care. We made the most of just being together during lockdown but slowly, Dylan’s abilities were draining away. He could no longer smile, sit up or move.”
The family were referred to GOSH where they were delivered the earth-shattering news in October 2020: “Kids don’t just lose abilities,” one Consultant told them: “We were grateful for her honesty,” and soon came the diagnosis of Sandhoff disease, a rare, inherited disease that progressively destroys nerve cells in the brain and spinal cord.
The chances of having Sandhoff are one in 1.2 million.Will, Dylan's Dad
The family felt psychologically and socially isolated and throughout 2021 spent time in and out of hospital, fighting pneumonia, seizures and apneas: “This disease is a bag of all of the worst things imaginable. 2021 was the most traumatic year as he lost his ability to focus and recognise. But Dylan never lost his calmness, and even in the most traumatic of times, he could settle us.”
Due to Covid restrictions, Will and Sarah couldn’t spend time together in the hospital and so would swap over in the car park: “We were having brutal conversations with consultants alone, because we couldn’t visit Dylan at the same time.”
The family were referred to Haven House: “They empowered us to take charge of Dylan’s care. We built a team around us at the hospital, in the community and at the hospice. They worked collaboratively and provided the most exceptional care for the whole family.”
Haven House supported the family with music, yoga therapy, and hydrotherapy, as well as care at home: “The hydrotherapy sessions did more for Dylan than a set of his epilepsy meds. He was so calm, and his seizures would settle. It devastates us to think that not every family gets to have experiences like this. Without our hospice, there would have been nothing. We would have never got this far.”
In February 2021 the family were told he had weeks to live, and again in October 2021. In November 2022 they were informed that Dylan would only live for a few days: “But he surprised us all and bounced back.”
Dylan lived to be the second oldest child on record with Sandhoff.Will, Dylan's Dad
Benny arrived in March 2022: “Telling people you are having another baby when your first child is so unwell, was mad. But Benny was light in a very dark time. We had to sit down and plan what we would do if Sarah went into labour while Dylan was dying.”
Benny was nine months old when his big brother, Dylan died: “He died at home, which is what we always wanted. We were together as a family. There was no great drama. It was just us. That’s what we always wanted.”
“Overnight, our lives became unrecognisable. Again. It’s amazing what you become capable of as a parent of a seriously ill child: Meds; CPR. Life adapts. There is simply no choice.”
“We suddenly felt very redundant. The medical teams went away, of course, but we found we missed their presence. We all had worked so hard. We collectively did everything we could for Dylan”.
And now, Will, Sarah and Benny are adapting to a new normal: “We had to adapt to the world of Children’s Palliative Care, and now we are adapting again. We are just parents now, no longer medical professionals. Benny is walking, which is a whole new experience for us. Everything feels new.”
On Dylan’s first birthday after he died, the family held a memorial for him: “We invited 250 people and celebrated his short but truly wonderful life. As my dad says: “A little life, with a big impact.” And that’s exactly right. He never uttered a single word, but made the biggest difference to everyone who knew him.”
Children like Dylan and their families rely on the support they receive from Children’s Hospices. But the government funding that children’s hospices rely upon is under threat – please sign our petition to help save the children’s hospice grant today.