Reece’s Story, By His Mother
A GM1 Type 2 Story
(Published April 1, 2026)
“Reece, we are told, is a miracle for still being with us at age 34. But this has not been easy.“
How did you feel when reece received a diagnosis of GM1 gangliosidosis?
Reece was diagnosed in March 1994. He was a gorgeous, bouncy 3-year-old. After the dreaded diagnosis was given, it felt very lonely as there were no other families with GM1 in the UK, and knowledge was limited. All we were really told was that he would not live into his teens.
How has GM1 gangliosidosis affected your family?
We lived on a knife edge, and every cough, cold or illness, we thought we would lose him. We eventually realised that we were not living life and making memories. We were just existing. So we changed our mindset and just lived in the moment with our wonderful boy even though our hearts were broken.
GM1 has been hard on us all along. We have two other fabulous children: Grant, age 32, and Summa, age 28. It was hard on them, as Reece became less able to do things and was often very unwell. But our wider family always helped, and we tried to make life as normal as possible and share our time.
My husband, Shaun, and I have always made sure we had time, too, and had open and honest conversations. It has been tough and still is when Reece can be so unwell at times, but we pull together and support each other.
what has been the most difficult part of being a gm1 caregiver?
Being a caregiver is tough when you are a mother and wife, too. I stay by Reece’s side in hospital, and this can be weeks at a time. Especially when our other children were young, I felt immense guilt. I would say spreading time is extremely tough and feeling guilty is heartbreaking. Also fighting for every little thing is exhausting to give Reece the life/care he needs and deserves.
What do you wish people understood more about rare diseases?
Living in the UK has been especially hard, as the understanding of rare diseases can be limited and therefore makes it difficult at times. Sometimes I feel that because the term “life-limiting” is used a lot, there is not enough research done to support families and children/young adults with their care and symptoms.
Reece, we are told, is a miracle for still being with us today at age 34. But this has not been easy. We have fought many times for doctors to not give up on him and to understand his condition. Knowledge is power, so continued research is essential to help families with these horrendous diseases.
Is there anything else you would like to add?
Reece is the most wonderful boy and everyone that meets him falls in love with him straight away. We have met many wonderful people over his lifetime, and we feel blessed to be his parents. Our children are amazing – so caring and compassionate. Our other son is a chef working in a dementia unit and our daughter is a paediatric respiratory nurse. I’m sure having Reece as their brother has been a big part of their journey. They adore him, but it has not been easy for them.
We stay strong as a family, and we feel blessed to have our boy with us. Our biggest piece of advice would be: live each day and cherish it. Be kind to yourselves, and remember we need a break sometimes to be the parents or siblings we are. Trust your gut. You know best. And, accept help.
Your support can help families like Reece’s find hope and advance research toward a treatment and an eventual cure for those living with GM1 .