A two-year-old girl who pulls her own hair out due to a rare genetic condition is helping to raise money for a child who has cancer. Sydney Miller is being sponsored to shave her head in a fundraising effort for fellow tot Flora Gentleman, whose parents found out she had cancer just three months after she was diagnosed with autism.
Both families are from Dunbar in East Lothian and met via a playgroup for children with additional needs. Three-year-old Flora Gentleman was diagnosed with the devastating cancer neuroblastoma in her stomach last year.
Parents Steph and Jamie had been hoping to send Flora to New York to be treated with a new bivalent vaccine being trialled in the US, with the drug being successful in preventing relapses of the condition. They need to raise £312,000 by August 2022 for Flora to enrol on the trial that aims to stop her neuroblastoma from coming back.
Sydney has Primrose Syndrome and has developed a fixation with biting at and pulling out her hair. She has developed a large bald patch on the top of her head as a result of the condition.
She is fed through a peg feed into her stomach but her remaining hair has started to get tangled in the tubes, which makes infection more likely. So her mum, Stacie, has decided to shave her daughter's remaining locks off and turn it into a fundraiser to help raise money to send Flora to the US.
Speaking to Edinburgh Live, 36-year-old Stacie said: "We first heard about Flora's story through a special needs playgroup that was set up during the pandemic. Both girls attended but we didn't actually get to meet Flora as she was often in hospital for treatment.
"I reached out to Stephanie - Flora's mum and explained we are going to be shaving Sydney's hair because she keeps pulling it out and it gets tangled in her feeding tubes. So we set a date to shave her head and a fundraising campaign to hopefully raise some money for Flora's treatment.
"Sydney's siblings have taken to her condition really well despite missing school for hospital appointments. We are in and out of the hospital and have a massive care team of doctors, nurses and consultants.
"It started as a change in her behaviour, because the condition is so rare we don't know what to expect. It started with a fixation on biting, she was biting her dummies and we were going through one a day.
"One day I noticed a bald patch on her head and noticed she had been pulling strands of hair out. Strands turned to clumps and then she started eating the clumps of hair that she pulls out, so we had to make the decision to shave it off. The hair Sydney pulls out gets tangled in the peg feed on her stomach that can cause infections so we need to shave it all off."
The mum-of-five continued: "She has a really high pain threshold so she doesn’t feel the pain when she rips her hair out but we need to shave it off quickly so it has been a quick fundraiser.
"The third of June is when we will be taking it all off, we are going to have a wee disco and Saskia from the X Factor has said she will perform - we just need to find a venue."
To donate to Sydney's fundraising efforts click here. Or to donate to Flora’s overall fundraising site visit here.
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