Whaplode Drove mother Nicole Pearce skydive challenge in aid of The LimbBo Foundation who helps brave toddler Oaklen
A two-year-old with a rare condition affecting his limbs has been hailed by his doting mum as ‘the strongest little lad I know’.
Oaklen Pearce, from Whaplode Drove, has been in and out of hospital since birth and his condition is so rare that it is unnamed by medical professionals.
The brave toddler’s left hand is fused together, he has missing fingers, fusion of toes and on one side of his body his bones are shorter - yet the youngster who adores animals ‘always has a smile on his face’.
His mum Nicole Pearce, 24, said: “Oaklen has a rare genetic disorder but testing is not advanced enough yet to diagnose it.
“I went through pregnancy thinking everything was fine.
“It has been a real struggle but he is the strongest little lad I know.”
Oaklen, who was born in Peterborough City Hospital in June 2022, experiences mobility issues due to a 2cm length difference on one leg which causes problems with his hip and ankle.
He wears a special boot to balance the discrepancy and may need leg lengthening surgery in the future. He also only has the use of his right hand and his digestive system can be affected.
Nicole said: “Simple things like walking a distance - if he doesn’t have his specialist shoes on he can have a nasty accident.
“But he is very independent and even with problems he is a determined little boy.
“He is the happiest, amazing little boy and it has been quite a journey for us.”
Although Nicole feels lucky that she has the support of her parents who own a car business that she will eventually run, a charity called The LimbBo Foundation has offered extra support when she felt she had ‘no place to turn to.’
The devoted mum worries about people ‘looking at differences and who might not be very nice’.
So she is taking on a skydive in aid of the foundation to raise awareness and funds for families with children who have limb differences.
Nicole said: “When no one really understood, LimbBo became a family and they can help others like they helped me.
“I didn’t feel as isolated when they put me in contact with other families.
“They have been the biggest support helping me through some surgery and always at the end of the phone if I need a chat.”
The charity supports people all over the world spreading awareness about children with limb differences and connecting families who are experiencing similar challenges.
LimbBo was set up by parents Adam and Katie Dengel when they found out at their 20 week scan that son Tommy was missing his right arm from Amiotic Band Syndrome.
Mrs Dengel said: “We basically got put in a room and told we had so many weeks for a termination.
“We had our son who is now 10 but thought how many others had no support .
“So when Tommy was around five we set up LimbBo foundation to help others like us.”
Nicole plans to do the skydive to face her fear of heights and show Oaklen - who goes to Enya’s Childcare and Forest School in Crowland where the kids and teachers are ‘amazing with him’ - that anything is possible.
She said: “I hate heights and it will be terrifying and I thought the best way to raise money is to do something that I am scared of.
“If Oaklen sees me do it he can also overcome his fears.”
“My little boy is remarkable.”
Nicole will be doing her skydive on Sunday, March 9 and more information about her fundraiser can be found here https://www.gofundme.com/f/limbbo-for-people-and-families-with-limb-differences?utm_campaign=fp_sharesheet_ai&utm_content=amp8_t4&utm_medium=customer&utm_source=email
Visit here https://limbbofoundation.co.uk/contact-us/ for further details about The LimbBo Foundation
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