A beautiful way to remember

“Ben was an amazing boy, and was a joy to be around,” mum Helen said. “He was a wonderful character, and always made his feelings well known. He loved TV and CBeebies, and he loved being with friends. 

“Ben was very much with us by our side as we climbed and to watch the sun rise was the most beautiful way to remember him.” 

Phil and Helen climbed Pen Y Fan with our adventurous team of Acorns supporters, taking in a breath-taking sunrise and spectacular views of the Brecon Beacons National Park.  

They also spoke about Ben’s devastating diagnosis and the lifeline support and specialist medical care they received from us during Ben’s final days.

“Ben had a number of health issues, he was profoundly deaf and he was born with a rare genetic disorder called Mitochondrial Disease,” Helen said. “It can affect people in different ways, but for Ben it affected his hearing, feeding, muscle tone and kidneys, which required dialysis during his final year.

“When Ben was 10-years-old we were given devastating news. He was diagnosed with cardiomyopathy, a condition affecting the heart, and we were told there were no further treatment options and we were referred for palliative care at Acorns.”

Helen added: “It was a slow decline, and the dialysis was taking its toll. Ben was very, very poorly but we were able to liaise with the specialist nurses about the care Ben needed, and they helped us to develop the advanced care plan, so that we were as prepared as we could be for what lay ahead. Acorns supported us in so many ways.”

The family had regular contact with one of our Family Support Workers, and Ben received specialist medical care and help with tube feeding, along with holistic therapies including massage, play and music. Helen and Phil were also able to access group support, along with alternative treatments.

It was in September 2016 when Ben passed away at home.

Acorns Sunrise Trek

Helen said: “When I saw the trek advertised, it spoke to me straight away. It felt like it would be an unforgettable experience and to do it with Ben firmly in our hearts would be something really beautiful and special.  

“While I did find the final stretch of the walk quite challenging, Phil and the trek leader were very encouraging – and I thought about Ben and what he went through. We made it to the summit with just minutes to spare and the sunrise was amazing.” 

Ultimately, Helen and Phil said the trek gave them purpose and something amazing to do to remember Ben – and to support Acorns to say ‘thank you’. 

Helen said: “We wanted to say thank you for all the wonderful support we were given by Acorns through such a horrendous time. We wanted to give back, so that others who are going through a similar situation get the medical care and all the support they need.”

After reaching the peak, a fellow bereaved parent gave them a stone she had painted with Ben’s name on it.

“We were really touched. We always painted stones, and it was really beautiful. We were able to place the stone at the summit in his memory as the sun rose.

“It was something so special and totally unforgettable.”