‘You can’t put a price on a life’: Newbury mother raises over £2,000 for baby’s life changing surgery
After her son was diagnosed with a rare condition, mother of four, Chloe Thorne, has completed an athletic challenge, raising £2,400 for those who are caring for her baby and her family during treatment.
Tiny Otis, who will be five months at the end of this week, was diagnosed with Crainiosynostosis, a condition where a material between the baby's skull bones, called sutures, close prematurely causing problems with normal brain and skull growth.
Premature closure of these sutures may also cause the pressure inside of the head to increase, the skull or facial bones to change shape and potentially lead to brain damage.
Otis underwent his cranio operation - completed by Dr Silva and his team at Great Ormond Street Hospital (GOSH) - on Monday (March 14 ) and will continue to have care until either the end of his childhood or into adulthood, if needed.
As a thank you to the hospital, and the NHS as a whole, Mrs Thorne joined the national ‘1,400 squats in February’ challenge.
With the help and support of her friends, family and neighbours, Mrs Thorne and her partner Joe have been squatting 50 times every day in a bid to raise money and awareness.
Though the treatment for their son has been free, the couple have said “you can’t put a price on a life” and hope that all money raised will go towards services and equipment that the family themselves found useful post diagnosis.
A day after Otis’ operation, Mrs Thorne said: “He has done really well, he has recovered quickly and we are hoping to come home today [Tuesday].
“We have had a whirlwind past few days.”
Speaking about the journey from diagnosis to operation she said: “It’s very difficult, we weren’t expecting it.
“Otis is our fourth baby and I was not aware of this condition before, so it was just unexpected.
“We are a lot better now that we are post-surgery. It’s just traumatic, we are not used to this sort of thing.”
Mrs Thorne also said it had been “quite difficult on the siblings” who are aged…. To …. .
However, the family has received “massive support” from those around them. Mrs Thorne said: “We have had a massive response and massive support from family and friends who have helped us raise £2,400 for charity so far. We are keeping it open and still collecting.”
She noted the importance of raising awareness and has created an Instagram page dedicated to Otis’ journey.
She added: “Not a lot of people know about [Craniosynostosis]. We have been documenting our progress since diagnosis so people will know what to look out for.”
She has also received support from charities such as Cranio Ribbons, who have provided the family with a welcome box full of items that they may need post-surgery.
They have also been donated pyjamas and a personalised gown for Otis to wear.
To donate to the cause visit: … and to follow Otis’ progress follow … on Instagram
