'Prime Minister, come and meet these children' begs single mum of disabled child, calling for more support
Mum Sherrie claimed she “had to fight tooth and nail to get Freya what she needs”.
The single mother of a child with a rare genetic condition has told LBC parents like her are regularly ignored and gaslit by medical professionals, calling for more to be done by Andy Burnham’s Labour government.
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Sherrie’s daughter Freya has Neurofibromatosis Type 1 (NF1), which causes tumours to develop where they shouldn’t and can trigger other developmental and behavioural challenges.
It occurs in 1 in 2,500 of the population, and it’s believed around 25,000 people have the condition in the UK.
Sherrie, who lives in Weston-super-Mare, told LBC: “To be honest with you, when I got the diagnosis…I Googled it and my world crumbled.”
Freya may be 5 years old, but she is closer cognitively to a toddler. She needs help with dressing, going to the toilet and communicating.
Despite her obvious additional needs, Sherrie claims she’s “had to fight tooth and nail to get Freya what she needs” – for example, taking her to A&E when a doctor said her head was changing shape.
Sherrie told LBC that Freya was eventually given an MRI scan which revealed a rare brain tumour along the optic nerve connecting the eye to the brain. She claims: “If I hadn't followed my gut, she would be blind by now.”
“I don't sleep very much anymore. My whole life is literally revolved around Freya now. Hospital appointments, school meetings, anything she needs. But sometimes when I do go to these appointments, I'm told that it's in my head. And that's not acceptable because I'm fighting for what she needs.”
“For a parent's mental health, when you're not listened to, it makes you feel crazy, and that is not what you need. You need someone to support and believe what you're saying.” As well as being gaslit, Sherrie claims she hasn’t “really had that much support” financially.
Her daughter Freya gets Disability Living Allowance (DLA) from the government, which is a benefit for children under 16 with difficulties walking or who need more looking after than children their age who don’t have a disability.
Sherrie claims the DLA she gets for Freya is “just over £700 a month”, which during the two years of her chemotherapy was spent on the cost of driving her from Weston-Super-Mare to hospital in Bristol “2 to 3 times a week”.
Sherrie told LBC that while she is “very lucky” to be able to continue to work as a carer in the hours Freya is at school, her daughter “costs a lot more than a normal child”.
“Her wheelchair, we use the car a lot more than what we would normally use it to transport to here, there, and everywhere because she can't physically walk everywhere. So financially it costs quite a bit. She will (also) only eat certain foods.”
Sherrie feels that not enough people understand what parents like her go through and says that needs to change from the top.
She says: “Prime Minister, and people below him, come out and meet these children, come out and see what their days are.”
“I'd like to see things change. I'd like to see things made easier for families like ours, support-wise.”
Steve is a nurse with Jessie May, a children’s hospice that supports families and children in the South West with life-limiting or life-threatening conditions.
He told LBC what Sherrie says happened to her is “a very familiar story”.
Steve says charities like Jessie May are doing what they can to support families but there’s more demand than they can cope with: “We've got 9 nurses in total spread across almost 100 families that we're trying to support with active visits. And we hear a lot of about assessment times feeling isolated, just needing more support. And there's only so many of us that can go around and do that.
“We've always got referrals coming through the door, and it's the families we don't know about as well. There’re endless numbers of children and families out there that we could support.”
A government spokesperson said: “No parent should ever feel they have to fight to be believed when raising concerns about their child's health.
"We recognise the huge pressure families like Sherrie's are under, both in navigating the health system and managing the day-to-day costs of caring for a disabled child.
“We are committed to ensuring health professionals listen to and act on parental concerns, and that families and unpaid carers get the support they need in caring for children with complex or life-limiting conditions.”