Hayden
“Children don't get long covid.”
That was the opinion of Hayden’s OT, one of many medical professionals who appeared to brush off his condition at first. Another doctor said the 14-year-old could get better “if he tried,” while a staff member in A&E just rolled his eyes and left Hayden and his family until last.
“I remember feeling so lost and upset, wanting to get out of the hospital and never go in again,” says Haden’s mum.
The only diagnosis Hayden got for a long time was for Functional Neurological Disorder (FND); something that proved to be more of a curse than a blessing.
“Many symptoms were dumped under the FND diagnosis,” says Hayden’s mum. “And when I asked the neurologist about Long Covid, she just shrugged her shoulders at me.
But it was clear something else was going on.
“My father had vascular dementia for years, and Hayden's illness reminded me of this,” says Hayden’s mum. In part, that’s because this grammar school boy used to love academic work - he found it easy. But as his long cold symptoms worsened, Hayden struggled to even form a sentence.
His physical symptoms worsened too.
What started with 10 days of headaches, fatigue and a loss of smell turned into dizziness, seizures, and crippling fatigue; Hayden would sleep for twelve hours each night and still wake up tired. He also struggled to regulate his body temperature and to know when he needed a wee or should stop.
“At one point, I counted that Hayden had experienced 48 Long Covid symptoms,” says his mum.
The worst was when he tried to stand up. His feet felt like they were burning and he’d need to hold on to furniture to steady himself as he walked; something that became near impossible by the end of the day.
Still, the paediatrician told Hayden to get up and walk.
“It’s all in his head,” they said.
Thankfully, there were some doctors who listened. After contracting the illness over a year before, Hayden was officially diagnosed with Long Covid from Evelina London Children’s Hospital in 2022. One doctor there taught him how to pace himself gradually to get through the day.
But it took a long time to get to this point.
Unfortunately, Hayden has now missed the majority of his education, managing just a single hour in a quiet room with a teacher four times a week.
For Mum, it would be enough to see Hayden back in school, being sociable and happy.
That is why Long Covid Kids is committed to creating resources like the LCK Educational Toolkit, and with your help, we can continue our work. Please consider donating today and help us be there for every family who needs us.
“He could cope with the physical disability, he just wants the use of his brain back.”
Long Covid Kids supports children and young people living with Long Covid and related illnesses, as well as the families and caregivers who look after them. We rely entirely on donations to fund our vital work. And this is why we need your help to continue helping children like Hayden who are struggling with Long Covid.
Please donate today to give children with Long Covid a brighter future.
£20 could help us continue championing the rights of children like Hayden whose lives have been turned upside down by Long Covid.
£10 could help us run weekly support sessions for children like Hayden who are immensely isolated by their illness.
£5 could help us moderate chat forums for young people like Hayden desperate to connect with others in the same situation.
Your gift can make a meaningful difference in the lives of these brave young people. Thank you for your support.
If you are a young person who has been affected by the ongoing symptoms of COVID, support is available, with or without a diagnosis. More info here.
If you, or someone you know has had a change in their health following a COVID infection reliable support and information can be found here:
