Giving Kierha back her independence – Appeal to raise £1,200 to buy electric wheelchair for Letchworth teenager with rare chronic pain condition
- Credit: Archant
An appeal has been launched to raise £1,200 to buy a lightweight electric wheelchair for a Letchworth teenager living with a rare chronic pain condition.
Kierha Megan, 17, was diagnosed with complex regional pain syndrome in April 2016 – initially in her left arm, but now also in her right leg.
She is unable to walk and cannot push herself in a self-propelling wheelchair for long because her left arm is rooted at a 90-degree angle.
Mum Rhian Jayne told the Comet that an electric wheelchair would give Kierha back her independence after feeling isolated and ‘stuck in a prison’.
Rhian, who has stopped working to care for her daughter, said: “This would mean she wouldn’t be all on her own, she wouldn’t be isolated.
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“She could just go up into town or to the supermarket, and go back to college without any problems of who’s going to walk her around.
“But the main thing for her would be that she wouldn’t feel like she’s stuck in a prison. She can’t walk at all. It’s not nice to feel like that.”
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Fundraisers have amassed £810 so far for Kierha, who Rhian said was ‘overwhelmed but loves that people care’.
The whole story began back in January 2016, when then-15-year-old Kierha hurt her left hand.
She had an operation to repair the injury, but about 10 days later her hand started to open again and her arm began to swell and turn purple.
Doctors gave her antibiotics, but the swelling wouldn’t go down – and it was found that she had a haematoma, a collection of blood outside a blood vessel.
Kierha had to have another three surgeries, the third of which checked for compartment syndrome. Days after that another haematoma was found, and she had to have surgery again.
She was then diagnosed first with acute carpal tunnel syndrome, then complex regional pain syndrome.
Rhian said: “This causes a lot of swelling and discolouration. It’s horrendous the pain you get from it, it’s excruciating.
“The brain recognises it as a trauma and exaggerates the pain for long periods – days, weeks, months.
“From all of the swelling her arm keeps going back to a 90-degree angle – she can’t straighten it. They did try taking her into theatre to fix it last August, but it didn’t work.”
All this seriously disrupted Kierha’s schoolwork, and contributed to her not getting the GCSE results she had been hoping for last summer.
And the situation got even worse in January this year, after Kierha cut her leg while shaving.
Rhian said: “She got quite a nasty cut needing seven stitches. That was all fine except that got infected.
“They took her into theatre to take off the infected skin – but that was a mistake. The complex regional pain syndrome got into her leg as well.
“Now she can’t walk and she has to hop everywhere. She was in hospital for seven weeks with her leg – it looked like it had been burned.”
Kierha has her mum and sister supporting her, as well as her grandmother in Hitchin.
On Thursday next week, she is set to go to a specialist hospital in Bath for an assessment that could lead to an intense inpatient stay.
Complex regional pain syndrome is a poorly-understood condition that can occur at any age, with the average age for symptoms to start being about 50.
It is more common in females than males, with one study claiming that one in 3,800 people in the UK develops CRPS every year.
To find out more or donate to Kierha’s cause, see justgiving.com/KierhaCRPS.
• Update: The fundraising page was taken down after the target was reached on the morning of April 6. The family would like to thank all who donated.