‘She brings so much positivity to our lives’ - Fundraising appeal to get St Neots’ Aida, 10, specialist shower bench
- Credit: Archant
An inspirational 10-year-old from St Neots with a rare genetic condition - who campaigned for NHS charities during lockdown – is now aiming to raise £6,000 for a specialist shower bench at home.
Aida Palfrey, who attends the Samuel Pepys Special School, has no speech, very limited mobility and daily seizures that can last for 20 minutes. She can also go without sleep for up to two days.
The youngster was diagnosed with CDKL5 shortly after she was born – but little was known about the condition.
However, this hasn’t stopped Aida loving the great outdoors and spending time with her pet pooch Jenson.
She also spent the lockdown period raising £2,000 for charity – but is now bringing the fundraising closer to home in a bid to raise funds for a shower bench.
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Proud dad Jamie, who is a catering manager at a hospice in London, said Aida will be taking part in walking challenges to fundraise for the specialist piece of equipment and bring awareness to her condition.
“She is the brightest, happiest little girl in the world,” he explained.
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“Nothing bothers Aida; she just gets on with life and takes everything in her stride.
“We are working on transforming our downstairs at home into her space – as she will need lifelong care.
“The shower bench will cost around £9,000 and we’ve already got £3,000 but decided to set up the JustGiving page for help.
“It will mean everything for her to be able to have a more comfortable life.”
Aida will need special care as she grows older, as well as her condition to be monitored.
Jamie, and his wife, Pelin, had to witness Aida go through several hospital visits and tests at just six weeks old before they learnt more about CDKL5.
He added: “Aida loves being outside and we go for a walk every day after school, so as long as she can feel the wind she loves to laugh.
“And, of course, there is her partner in crime Jenson by her side too.
“It has been a very testing journey, but Aida brings so much positivity to our lives.”
To donate to Aida’s campaign visit: https://www.justgiving.com/crowdfunding/aidasdailychallenge