Wigan mum's anguish as toddler son's agonising condition remains undiagnosed

A devastated Wigan mum says that the NHS has failed her toddler son who has been suffering from a painful, debilitating condition since birth and still has no diagnosis.

Tuesday, 24th September 2019, 8:49 am
Updated Tuesday, 24th September 2019, 9:49 am
Joanne Grimshaw and her son Ellis

Ellis Grimshaw, from Aspull, is two and a half but still cannot walk, talk or crawl.

Since birth he has suffered from severe muscle spasms, which can leave him in agony throughout the entire day and has been diagnosed with sepsis three times.

His mum, Joanne, 35, says that the only time he sleeps is when he has become so exhausted he has no choice.

Sign up to our daily newsletter

The i newsletter cut through the noise

Joanne Grimshaw and her son Ellis

“He sleeps about one and a half hours a night,” she said. “When he was born he had difficulties from the start. He would cry for around 23 out of 24 hours a day.

“I took him to A&E but they said that nothing was wrong with him. One particular morning they got social services involved because they thought I was an overly neurotic mother.

“I’m not a first-time mum. I knew that something was difficult and something was seriously wrong.

“I ended up having a breakdown because we were getting absolutely nowhere with it.”

After months of return trips to the hospital, Ellis was eventually looked at by doctors who said that he could have cerebral palsy.

Joanne, who also has a five-year-old daughter called Evie, said that he was eventually given an MRI scan which showed that part of his brain is missing.

“I got told following the first MRI that they can’t rule cerebral palsy out,” she said. “They said they can find scarring after 18 months.

“I have asked for another MRI and a full body scan because he’s in so much pain but we just can’t get answers.

“They promised they would keep up to date and they have completely let us down.

“He has been through a horrendous time. There will be other children out there suffering just like my son too.

“I don’t know how I would have coped without my family, my husband’s family around us. But there are people going through the same who don’t have that support network too.”

For the past year Joanne and her husband Lee have waited with bated breath for a call from the neurology department in Manchester after being told that their son had been referred to see a specialist.

“We haven’t heard anything,” she added. “They are trying to blame Manchester and Manchester has said they have never received anything from Wigan.

“I know there’s no miraculously recovery for my son, but he doesn’t have to live in pain.

“I understand that everyone is under pressure, there aren’t enough staff.”

She said that Ellis’s paediatrician has been “brilliant” but there is only so much that can be done to help without constraints from the top.

A spokesperson for Wrightington, Wigan and Leigh NHS Trust said that the Patient Advice and Liaison Service (PALS) is aware of the case.

“At this time, we are unable to comment as there is ongoing care and treatment which is confidential.”