Member Stories

Hardington and West Coker Cricket Club (by Lucy Pearse)
In 2014, our perfectly imperfect little boy entered his new world and our family. When he was 6 weeks old we learnt that he had craniosynostosis (metopic) and so our journey began.
» Read Lucy's Story

Hannah Lindfield (by Milli Lindfield)
Hannah Lindfield, who suffered from Pfeiffer Syndrome, was a prolific painter and writer. Her book, 'Invisible Struggle', shares her story, offering inspiration and hope to those facing similar challenges. Hannah sadly died in 2014, aged 23, and her mother, Milli, has written a moving article about her life.
» Read Hannah's Story

Theo's Story (by Kerri Edwards)
Theo is one year old - Metopic

At just 8 weeks old Theo was rushed to Bristol Childrens’ Hospital with suspected meningitis. We were kept in for five days so Theo could have IV antibiotics. His blood tests showed signs of infection in his body but they didn’t know where. On day 3 the paediatrician came to see how he was progressing and it was then she noticed a ridge on his forehead and said he had possible Craniosynostosis and would need to go for a CT scan.
» Read Theo's Story

Riding for the Disabled - A galloping success (by Ingrid Laurence)
Max, 10 years old, London - ERF

No one who has ever seen the children at the Headlines Family Weekends rushing to interact with the Forest Floor Reptiles can be in any doubt that animals can offer a special sort of therapy for children.
» Read Max's Story

In memory of Sasha Gentle (by Zoe Hilton-Webb)

I am writing this article in memory of my friend Sasha because this February it was ten years since she died. I wanted to do something in her memory and I thought I would share some of my memories that I have of Sasha.
» Read Sasha's Story

Danielle's Story
Craniofrontonasal Dysplasia

Hello my name is Danielle, I’m 21 years old and I live in Greater Manchester. When I was born I was diagnosed with having a craniofacial condition called Craniofrontonasal dysplasia, which caused the bones in my skull to fuse together. This meant that there was little room for my brain to grow and develop. Other features of my condition included having wide spaced eyes, splits in the nails and webbing under the arms.
» Read Danielle's Story

Alice’s Story
Alice Baldwin, 19 years old, Newbury - Aperts Syndrome

Hiya! I’m Alice and I have Aperts Syndrome. Many of you may recognise my face from my previous article I wrote for headlines a couple of years ago. I wrote my life story, explaining what operations I have had over the past 19 years along with the good and the bad things that have happened in my life
» Read Alice’s Story

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