Steven is running the Great North Run on 8th September to raise money for Headlines Craniofacial Support.

Headlines is the only UK charity to support individuals and their families affected by craniosynostosis. As you may know, Ophelia was born with Pfeiffer Syndrome. Something we had never heard of.

I contacted Headlines after Ophelia was born for information, which is invaluable for any new parent facing a new diagnosis/coming to terms with what that means for the future, given the many surgeries that inevitably come with a diagnosis. It was hard enough learning of Ophelia’s diagnosis, so to be able to speak to someone on the phone, who knows what your child’s syndrome is and how life changing that is, really is priceless.

Headlines organise a family weekend every year, where families come together, get involved in various different outwards bounds activities, games, discos and generally have lots of fun! It’s so nice to be able to get to know other children/families and just be amongst other families like your own.

It’s an opportunity to be able to chat about your child/what’s going on medically, speak to other families who may be further ahead of their journey and give new parents information based on your own experiences. It also allows siblings a vital opportunity to meet/play with other siblings.

I remember the first family weekend we attended, Ophelia was only about 2/3. When we arrived she stopped in her tracks and couldn’t take her eyes off all the children with a similar diagnosis to herself. In that moment, without her being able to articulate her differences, she just knew she wasn’t alone and there were other kids like herself. It brought tears to my eyes, it’s a moment I won’t forget.

I knew at that point how important Headlines was going to be for us and how important it is for the children themselves to be able to meet one another and for them/their families to form long life friendships.

Headlines work tirelessly supporting families, providing them with information, organising their annual family weekend/other events and fund research to further advance the treatment/surgeries for craniosynostosis.

They have also recently set up ‘Cranio Dads’. This is a vital network for Dads and I know is something that will go from strength to strength. There’s a really powerful video linked here if anyone would like to watch …https://video.wixstatic.com/video/5a5def_358704896ed44f06878400e31adca30c/1080p/mp4/file.mp4

Flick for photo of Ophelia and one of her friends she made at Headlines a few years ago <3