'I'd rather be a neurotic parent than a grieving one,' - bereaved mum

A bereaved mother is hoping to create a lasting legacy through charity work after her 11-year-old died unexpectedly in his sleep.

Kimberley Shepherd said she was dedicating her life to keeping her son Liam's memory alive following his death on 23 March 2021.

Despite suffering seizures in 2017 and 2020, Liam's epilepsy was undiagnosed until after his death. His mother, from Weston-super-Mare, has now set up the Liam Shepherd Foundation, which has raised more than £55,000 for 60 charities.

"He never got the treatment that he needed and deserved," said Ms Shepherd. "I knew deep down, I knew something was wrong. She is urging other parents to follow their instinct and keep asking for help.

'Just me and him'

"Liam did a lot of charity work when he was alive and I wanted to keep that going," Ms Shepherd said.

"Liam was a very kind and sporty. He had lots of friends.

"It was just me and him, just the two of us. We had a special relationship - he was more than just my son, he was my best friend."

The 39-year-old teacher, who is battling bowel cancer, said she also wants to raise awareness about Sudden Unexplained Death in Childhood (SUDC) and Sudden Unexpected Death in Epilepsy ( SUDEP ).

Mum smiling with her son
Liam had two night seizures but was not diagnosed with epilepsy until after he died [ Liam Shepard Foundation]

Liam’s first seizure happened when he was seven years old while he was sleeping. It was witnessed by his mother, but medics incorrectly believed it was due to a temperature from a virus that caused febrile convulsions.

He had a second seizure the night before his 10th birthday in February 2020. Doctors again failed to diagnose epilepsy and blamed it on Liam being "over-excited" about his birthday.

Neither incident was linked by medical experts, but since his death the University Hospitals Bristol and Weston NHS Foundation Trust (UHBW) has increased the number of clinical nurse epilepsy specialists to help review and monitor patients.

Health leaders have also appointed two additional paediatricians who have a special interest in epilepsy.

Ms Shepherd is urging other parents to follow their instinct and to keep asking for help.

"I'd rather be a neurotic parent than a grieving one," she said.

"I just want people to be more aware and just want to keep his name alive, because it gives me a purpose."

The foundation has so far supported 60 charities, as well as sponsoring local football and rugby clubs.

Money for the foundation is raised from charity runs, football matches and by local schools.

'We're deeply sorry'

Interim chief medical officer at UHBW, Dr Rebecca Maxwell, said: “We are deeply sorry for the missed opportunities in Liam’s care and our thoughts remain with his family.

"We have already made improvements and will continue to do so if we identify further developments are required.”

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