A nine-year-old schoolgirl is embarking on a heartfelt charity bike ride in memory of a baby who died in his mother’s arms just days before his first birthday.
Ella-May Saunders, of Tharston, near Long Stratton, will be riding 25 miles in a day to raise vital funds for East Anglia’s Children’s Hospices (EACH).
It comes ahead of what would have been James Thorndyke’s fourth birthday.
At eight weeks old, following his first set of immunisations, the seemingly healthy tot was diagnosed with Severe Combined Immunodeficiency (SCID) after developing a cough.
The early childhood genetic disease leaves babies with a defective immune system and is also very rare.
Parents Susie and Justin Thorndyke, of neighbouring village Forncett St Mary, went through unimaginable grief following his death in 2017
Speaking at the time, Mrs Thorndyke said: “James died in my arms on the sofa at home.
“It is the hardest thing I've ever had to do to watch my baby take his last breath.”
Despite numerous visits to Great Ormond Street Hospital and a bone marrow transplant with T-cells donated by his dad, he became worse. Scans showed the transplant had not worked.
The couple was advised to take their son home, and James died on February 18, 2017.
Since then, the couple has gone on to raise thousands of pounds for the charitable cause that helped them through their journey.
They raised more than £16,000 at a ball held in his memory. They welcomed 300 people to Sprowston Manor on a Saturday night back in 2018 to fundraise for the Quidenham-based EACH.
And now Ella-May is set to join in with the efforts with her own fundraiser.
The Aslacton Primary School pupil will be raising money for EACH after it helped cared for James.
She will be riding around her village covering the approximate distance between Diss and Norwich, which is made even more impressive by her own struggle with hypermobile joints.
Her mum, Louise Saunders, explained how she had been training every weekend by going out on long rides.
“The closer we get to the day, the more nervous she is,” she said. “She is worried about how long it will take her to complete it but we’ve told her it doesn’t matter and that if it takes all day, then it takes all day.
“We are just very proud of her for doing this.”
No stranger to fundraisers, Mrs Saunders’ own efforts saw her raise more than £2,000 for EACH after she ran 20 miles in 2018 also in memory of baby James.
Ella-May will be joined by her mum on Saturday, April 2, along with her dad, Jonny, 40, and younger sister, Florence, five, who will be following on a tandem bike.
James’ parents, who are close friends with Mrs Saunders, are also planning to be at the finish line to congratulate Ella-May.
Along with the bike ride, she has also organised a raffle and a cake sale and has so far raised more than £2,000, exceeding her initial target.
Ella-May added: "EACH charity is very close to my family's heart.
“I want to follow in my mum's footsteps by raising money for this worthy charity.”
Since 2017, Mr and Mrs Thorndyke have been campaigning in their son's memory to raise awareness of the condition and to make screening for the disease normal practice in the UK.
After learning a £2.50 simple heel prick test to detect the condition could have saved his life, the couple have been calling along with their consultant, Professor Bobby Gaspar from Great Ormond Street Hospital, to begin national screenings from birth.
Following their son's death, the couple set up a petition to get the government to introduce SCID screening for newborns - which was approved for a national pilot by the Newborn Screening Committee.
To donate to Ella-May’s fundraiser, visit www.justgiving.com/fundraising/ella-maysaunders
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