Littlehampton Mum Urges Support For Cranial Condition As Donations Slow

A Littlehampton mum whose son suffers from Craniosynostosis, is asking the public to help raise funds for 'care packages' for children going into surgery.

Craniosynostosis is a condition where the sutures in an infant’s skull close too early, potentially affecting the growth of the head and brain.

It affects one in every 2,000 children, often requiring surgical intervention to allow for proper brain development and head shape.

It varies in severity from child to child with the vast majority needing at least one corrective skull surgery within their first year of life. Some need many more.

Examples of children with Sagittal Craniosynostosis

Money raised by crowdfunding provides care packages for children and families who are about to undergo surgery, including warrior teddy bears with the child's name on them.

Toni Goatcher, whose son Ollie suffers with the condition, says donations to the JustGiving crowdfunding page have slowed recently, meaning they are running out of stock and donations.

Toni told us how their son's condition has affected their lives:

"We first found out that something was wrong with Ollie when we had his six-week check with a locum GP who noticed the elongated shape to his head.

"We were referred to our local hospital and then on to Great Ormond Street hospitals craniofacial team who diagnosed him with sagittal craniosynostosis.

"Ollie was admitted for a spring insertion operation which involved removing the fused suture and using springs to allow the skull to regrow properly.

"The operation looked to be a success until a few days later when he was rushed to Worthing hospital to discover that one of the springs had dislodged and both needed to be removed in an emergency surgery.

"Luckily, both of the springs had already done their job and Ollie recovered quickly without the need for them to be replaced. Over the next few years Ollie was diagnosed with epilepsy and has suffered with severe headaches which cause him dizziness and the wobbles, which really impacted his primary school life and learning (he was working at roughly 2.5 years below his peers)

"His headaches and focal seizures saw the need for him to be picked up from school almost daily.

"In 2018 we went for a routine check up at GOSH and were told that unfortunately Ollie's skull had grown back very thin and narrow again, putting pressure on his brain.

"He was admitted for pressure monitoring and after some worryingly high readings, within a week they were prepping him for the big one; a complete rebuild of his skull.

"Although the operation was deemed a success at the time, unfortunately his skull has grown back narrow and will need more surgery. There are signs of a slight pressure build up and when we see his consultant in a couple of weeks we will know how urgent the surgery is.

"So life with Ollie is a jumble of emotions; CT and MRI scans, hospitals, doctors, surgeons and worry! He's an amazing boy who takes everything in his stride. He's loving life at secondary school and sea cadets and dreams of joining the Navy when he leaves school.

"Please, please help us to raise awareness."

"All of our support groups are run by parents and carers of children with this condition and it is left up to us to raise awareness so I'm giving it my all!"

The fundraising link is Https://www.justgiving.com/crowdfunding/cranio-ribbons11

If you have a child with Craniosynostosis, you can join the Cranio Ribbons UK Parents Support group on Facebook and find them on Instagram - both are run by Kelly Outlaw, who also makes up all the care packages.