When Wednesday, 12, caught Covid-19, her mother Melissa Lynch never dreamed they’d be struggling with complications 13 months later.
Wednesday’s initial illness was mild, but her symptoms returned after a few weeks.
“She’s getting worse,” her mother said recently. “Her cognitive levels have declined. She now has seizures, she passes out.”
Wednesday lives in North Carolina, but children around the world share her experience with Long Covid. To help raise awareness and search for treatments, her mother has joined a group started in the UK, Long Covid Kids, a registered charity, founded in the UK by Sammie Mcfarland.
Though the group’s members are diverse, they all agree: not enough people are listening.
Wednesday’s Story
On October 1, 2020, Wednesday was diagnosed with Long Covid. She was one of the first children diagnosed in the United States.
If Wednesday wanted to visit a paediatric Long Covid specialist, she’d have to travel more than 1,000 miles. Instead, she makes a six-hour journey once a month to a centre that focuses on adults.
Like most kids with Long Covid, Wednesday is often out of school. Her mother said that Wednesday’s new symptoms are causing her performance to suffer.
“She started having absentee seizures. Her eyes glaze over and it’s almost like she glitches like a computer. She would just stop and it’s like a computer rebooting.”
She added that Wednesday has dropped from a ninth-grade reading level – the American equivalent to S4 – to third-grade (P5).
Long Covid Kids: Fighting for recognition
In Ireland, Sarah O’Connell joined Long Covid Kids because of her experience with post-viral infections. She and her 10-year-old daughter both have ME/CFS, which puts them at risk for Covid-19 complications.
“I’ve had to pull my daughter from school to keep her safe. She just can’t afford to get Covid.
Her experience with ME/CFS has taught her how slow the medical profession is to adapt to post-viral conditions. If more people had taken ME/CFS seriously years ago, we might be better prepared for Long Covid, she said.
She works with Long Covid Kids to convince more health officials to learn about Long Covid. She says training GPs, school staff and other leaders to recognise Long Covid will benefit families in the long run.
What’s available to kids with Long Covid in Scotland?
The Scottish Government has established a £10 million Long Covid support fund, to help local NHS boards establish treatment options. When introducing the government’s plan in September, health secretary Humza Yousaf admitted that treating Long Covid is still a moving target.
“There remains much we do not yet know about long COVID, including the underlying causes, why some people are affected and others not, and importantly, exactly how long these effects can be expected to last for any one individual.”
‘I don’t care if it’s one child or 75%’
While the research plods along, Melissa said that what she really wants to see is more people taking her daughter’s and other children’s conditions seriously.
“Everybody needs to put everything political aside. This is our future generation. And we don’t know how Long Covid is going to affect them in the future.
“When I hear it’s rare, I say I don’t care if it’s one child or 75%. It’s still going to affect the future.”
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