Stanley’s story: missed more than ever

Diagnosed with the rare condition Tay Sachs at just 13 months, Stanley Murphy, who died in the Summer of 2019, aged four, had no muscle tone and couldn’t move or support his head. Stanley, lived with his big brother Fynn and their parents in Devon.

Stanley often had seizures and his family knew that their time with him was precious. Describing the shock of the day that the family received Stanley’s diagnosis, his mum Emma says, “I still have no memory of leaving that room in Bristol Children’s Hospital and travelling home. The shock was immense. The small shred of hope we had left after weeks of tests was just wiped away in an instant! The following months were tougher than I could ever explain.”

Following the diagnosis, Emma describes how although the initial shock slowly eased, to be replaced by an intense sadness that they still live with every day.

Challenging the DLA

Stanley’s rare condition meant that he couldn’t move, and had to lie horizontally at all times. This meant to leave the house with Stanley, and all the equipment he relied on, was incredibly difficult. However, due to a legal loophole barring children under three from receiving the mobility element of the Disability Living Allowance, the family could not afford the expensive adapted car and equipment they needed, meaning in his early life Stanley was effectively stuck at home.

To challenge this, Stanley’s family worked with Together for Short Lives to challenge and change the mobility element of the Disability Living Allowance (DLA) – taking the campaign to Westminster and beyond. His parents were committed to having the same opportunities for their young family that other families enjoy, yet they have found they have needed to fight for even the most basic provision such as access to socialising and play opportunities, vital equipment and support.

During the campaign Emma appeared on her local TV news station, and as a result a kind benefactor stepped forward and gave the family the funds they needed to buy a car – which opened up a world of opportunities for Stanley. “If we hadn’t had a wheelchair accessible vehicle for Stanley until he was three, Stanley’s life experiences would have been extremely limited,” says Emma. “The vehicle helped us get out and about, giving Stanley the quality of life he deserved and helping us make amazing memories, that we will treasure forever.”

“We wanted to give Stanley the quality of life that he deserved.”

Emma, Stanley’s mum

“The people who make decisions that affect our lives haven’t a clue what life is really like,” says Emma. “There are lots of children with short lives and you don’t have time on your side. We wanted to give Stanley the quality of life that he deserved when he was with us.”

Within the sadness, and despite all the work the family had to do, Emma always wanted to ensure that Stanley was able to live his life to the full. She says, “We lived with sadness, but also with love, hope and so much kindness. We felt very lucky to wake up to our beautiful boys every day.”

Stanley died in the Summer of 2019. Although his life was short, it was filled with love, hope and kindness.

Grief during a lockdown

For Mum Emma, coping with her grief during isolation has been extremely difficult: “At the start I really struggled. Our way of coping is our daily routine, and we like to get out the house as much as possible but obviously now that isn’t possible. Being stuck at home has been horrific. All of the special memory days at the hospice had to be stopped and we just felt trapped at the beginning but we are slowly settling into it.”