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A mum whose 14-year-old son faced numerous medical challenges during his short life has described him as a ‘gentle soul who touched the lives of so many’.
William Carlson had the brain malformation Lissencephaly and died at East Anglia’s Children’s Hospices’ (EACH) Milton base in September.
As well as receiving end-of-life care, overseen by the charity’s symptom management team, EACH continues to support parents Steve and Helen and sisters Eliza, 11, and Cecily, seven.
“William radiated joy and was a special boy who taught us the true meaning of unconditional love,” said Helen.
“Just spending time with him felt like a spiritual experience, because he was such a pure soul. He never did anything wrong.
“He had such a massive impact and touched the lives of so many, without ever being able to say a word or move independently.
“That’s an incredible thing to say but so true and evident in the lovely comments and messages we’ve received since he died.
“Even people we don’t know especially well were affected by him and his life, and he was such a gentle soul.
“If I was having a bad or stressful day, he could calm me down just by letting me hold his beautiful hands or resting my head next to his.
“He’d give the most amazing smiles – especially when he was younger and before his neurological health started to deteriorate.
“He’d beam at us, and it always brought happy tears to my eyes. Every smile felt like a miracle and brought a joy like no other.”
William and his family have been coming to the hospice since he was just ten months old, and he enjoyed numerous short breaks in the following years. He particularly liked the sensory room, hydro pool and playground, while also enjoying music and time in the sound cradle.
In addition to having Lissencephaly, the former student at Spring Common School, in Huntingdon, also had Dandy Walker Variant and Agenesis of the Corpus Callosum.
He had complex epilepsy, cortical visual impairment and was profoundly disabled, with multiple learning difficulties and complex respiratory needs.
Despite these challenges, he packed plenty into his life – from being a ring bearer at three different weddings, numerous holidays, being invited to a Together for Short Lives Disney Christmas party, meeting HRH The Prince and Princess of Wales during their visit to Milton in June 2022 and even being asked to open the St Ives branch of Morrisons.
“We’re so proud of everything he achieved and want as many people as possible to know about him, while also helping shine a light on EACH,” said Helen.
“The care and support we received was incredible in so many ways, especially at the end of William’s life.
“The best way I can describe it was like walking into a giant hug.
“Everyone did so much for us, and it was the little touches that made such a difference.
“Everything felt very personal, and the team listened to and respected our wishes, in terms of the way we wanted things to be.
“We didn’t want our remaining time together to feel sad and sombre.
“Instead, we wanted some laughter and I like the thought that, in his final hours, William heard myself, Steve, Eliza and Cecily giggling.”
When it came to the end, grandparents and other family members were able to say their goodbyes, and the care team created casts and artwork using William’s hands.
“They worked around us, to make sure we were as comfortable and supported as possible,” said Helen.
“We stayed at the hospice for three days in total, and having that time together helped us come to terms with what had happened.
“It allowed the reality to set in, giving us an opportunity to share stories, reminisce and reflect, and there were people to guide and reassure us. Genuinely, it was like being looked after by a group of angels.
“We always knew William was going to die too soon, but we wanted his death to be the best it could possibly be. I didn’t want him to be in pain or suffering.
“EACH helped us achieve that, giving him the life and death we’d hoped for and making things as least traumatic as possible.
“Our prayers were answered through EACH, ensuring he was surrounded by love and pain-free when he died. While it was a sad moment, it was also very beautiful.
“It could have been very different, and that makes me feel so thankful. It may sound strange, but I wouldn’t change a thing of terms of the way things happened.”
William and his family arrived at Milton after being transferred from the Holly Ward at Hinchingbrooke Hospital on 12th September. William died the following day, and the family stayed together at the hospice until 16th September.
“As we left the hospice we played William’s song – a piece of music he’d helped create during one of his short breaks at the hospice with Senior Care Assistant Ben Goddard,” said Helen.
“It was sad but beautiful.
“We used the same piece of music when his body was brought into the church at the start of his funeral.
“It was so unique and personal – one of many special memories from our years at Milton.
“EACH will always be part of William and he’ll always be part of EACH.
“They supported us in so many ways and not just at the end.
“Milton became a second home to us and our place of safety and rest. Truly, we couldn’t be more thankful.”
William’s funeral, which was attended by more than 200 people and streamed to family and friends in Australia, America and Myanmar, took place at The Bridge Church, in St Ives, on 10th October.
Rather than having flowers, his family used the occasion to raise funds for EACH in William’s memory.
