A YOUNGSTER thought to be the only person in the country with a rare genetic disorder is having her head shaved to help a fellow East Lothian toddler who has cancer.

Sydney Miller was diagnosed with Primrose syndrome when she was 10 months old – making her the only person in Scotland with the progressive genetic disorder.

At the time, there were thought to be just over 50 cases throughout the world. Symptoms include learning disabilities, hearing problems and movement disorders; the condition also leads to her pulling her hair out.

So on June 3, 27-month-old Sydney, who lives near Dunbar, will have her head shaved to raise money for Flora Gentleman, of Aberlady.

Three-year-old Flora, who is non-verbal, was diagnosed with stage four neuroblastoma in April last year.

Her family are aiming to raise £312,000, which would allow them to take her to New York for a bivalent vaccine trial at the Memorial Sloan Kettering Cancer Center to reduce the chances of her cancer returning.

Sydney’s mum Stacie said: “We have never met Flora or her family in person.

“We started to attend an additional needs playgroup during Covid but unfortunately Flora was going through treatment, was pretty poorly or could not mix with others.

“We never got to meet her but Flora is all over East Lothian on social media with people fundraising.

“We had seen and heard about her and that is when we thought we are shaving our girl’s head and may as well fundraise.”

 

A series of events are planned over the coming weeks to help raise the money for Flora.

Her mum and dad, Stephanie Kent and Jamie Gentleman, have already raised about £250,000 but need to find another £60,000 or so by August.

Stephanie said: “Sydney’s mum reached out to me a couple of weeks ago and her message was really moving.

"We’re both mums to little girls with additional needs, and it was very moving to read about Sydney’s story and their fundraising plans for Flora.

“It’s just lovely to hear of one very special little girl, helping out another very special little girl.”

Since Flora’s diagnosis, she has undergone eight rounds of chemotherapy, a seven-hour surgery, five weeks of high dose chemotherapy and a stem cell transplant in isolation, radiotherapy, countless scans, tests and blood transfusions.

On Monday, she began her fourth round of immunotherapy – she is due to receive a fifth cycle later this summer.

It follows a massive scare earlier in the month when the toddler contracted sepsis.

Stephanie said: “She almost ended up having a cardiac arrest when she was down in theatre having her line removed.

“The scariest day we have had so far but she recovered really quickly and within 24 hours she was bouncing off the walls like her usual self while myself and Jamie were still recovering. We’re so thankful.

“Me and Jamie were talking recently about the sepsis thing and it’s like you forget when going through treatment how toxic and nasty some of these things are to her immune system.

“You do forget about the infections and how quickly things can go downhill.”

Flora’s treatment with the NHS is due to conclude next month.

Stephanie continued: “We are really hopeful now that we’re over £200,000 – once we hit that amountit was almost relief, just as it was when we hit £100,000.

“It’s a huge milestone and a huge amount of money.

“It feels like the end is in sight, especially looking back to how we felt when we were sitting on £20,000.

“It feels more achievable by the day.”

The family needs to meet the fundraising target in three months’ time or they will not be able to go to America for the treatment.

“There is no safety net, it is important we keep going,” said Stephanie.

“We have such an amazing community behind us, not just East Lothian, but everywhere at the moment.”

The trial itself lasts three years so the family would travel back and forth between Aberlady and New York during that time.

Stacie, 36, told the Courier she had “a normal pregnancy” but when Sydney was born she failed the new-born hearing test.

Within the first two weeks, she was not opening her right eye, with concerns it could be a blocked tear duct.

Stacie, who lives with husband Stuart and children Mackenzie (15), Bradley (14), Pree (12) and seven-year-old Carson, said “mother’s instinct” meant she felt there was something else wrong.

Sydney was then diagnosed with Horner syndrome – a relatively rare disorder characterised by problems surrounding the eyes – before fears that she had neuroblastoma.

An emergency MRI came back clear before a doctor finally gave the diagnosis of Primrose syndrome.

Stacie, who runs Krazee Capers and Tie the Knot Wedding Car Hire, said she had to turn to Google to find out more about the condition because it was so rare.

The condition has led to the youngster pulling out her hair and then eating it.

That led to the family taking the difficult decision to shave her head.

They hope to raise £1,000 for Flora by inviting people to donate to a charity headshave.

Stacie said: “We had to take her dummy off her about three months ago. She had a big behavioural change where, she does not bite people but she has got an urge to bite, whether it is a pillow or anything else.

“She was biting the teat off the dummy and we were going through a dummy a day.

“It came to it she was going to end up choking and we got rid of the dummy. She came off it absolutely fine but I had snapped a picture of her and in the picture I noticed a band of baldness.

“I had not noticed it in person but from then on I was watching her and she was taking it strand by strand.

“It was turning into handfuls and chunks and she has now started eating it.

“She has got a peg feed in her tummy and it was becoming wrapped in that and becoming infected.

“She has been pretty poorly in the last month and that was when we came to the decision for her.”

Stephanie and Jamie, meanwhile, wish to thank all who have fundraised for Flora over the last year, saying: “We would have no chance of accessing this treatment without the support of everyone involved in Flora’s fundraising, and so we are incredibly grateful for the support.

“As for East Lothian, we couldn’t have asked for a more supportive community. We moved to East Lothian just a few months before Covid struck, the community has treated us like we’ve been here all along and like we’re one of their own. We’ve learnt a lot over the last year, we’ve experienced the lowest of lows and witnessed things no parent should ever have to witness.

“But we’ve also experienced kindness and warmth from complete strangers, and when going through something like this, those moments of kindness are so important.”

To support Sydney’s appeal for Flora, go to www.solvingkidscancer.org.uk/fundraisers/sydneys-help-for-flora-

Donations to Flora’s appeal can be made here: www.solvingkidscancer.org.uk/appeal/flora