Thanks for visiting our Just Giving site, as many of you may know, Grace was diagnosed with Non Syndromic Sagittal Craniosynostosis and underwent surgery at Alder Hey Children's Hospital in April 2019. Some of you have asked what to get Grace for her birthday and she doesn't really need anything, therefore a donation to this amazing charity would be really appreciated. 

Craniosynostosis affects 1 in 2,000 births, and up to 350 children are born with this condition in the UK every year.

Headlines Craniofacial Support are the leading UK charity supporting people with craniosynostosis and other rare craniofacial conditions. Craniosynostosis is a rare craniofacial condition where two or more plates of the skull prematurely fuse to each other, usually before birth. This results in the baby’s skull not growing properly and the newborn’s head shape being different at birth. The shape of the head may continue to change after birth as it grows.

Headlines' Mission is to:

• Raise awareness and educate people to improve public understanding of craniosynostosis and rare craniofacial conditions
• Support people with craniosynostosis and rare craniofacial conditions throughout their lives to overcome the physical, psychological and social impacts of living with these conditions
• Support research that seeks to advance understanding, ensures the provision of quality care, and identifies the best treatments for craniosynostosis and rare craniofacial condition

At Grace's 8 week check our GP couldn't find a soft spot on Grace's head. She referred us to a paediatrician at our local hospital who arranged for the GP to monitor Grace's head growth. 

The paediatrician told our GP that because Grace's head was growing she didn't have craniosynostosis (Many paediatricians will never come across a child with craniosynostosis making the work Headlines do even more important). Thankfully our GP was incredibly supportive and agreed to refer Grace to Alder Hey to ease our concerns. 

We went to meet the surgeon at Alder Hey thinking that the paediatrician was probably right and there was nothing wrong with Grace's head.  When Grace was diagnosed, it came as a big shock for us but we were thankful that as it had been caught early enough, Grace could have the less invasive procedure.

On the 26th of April, Grace had surgery to cut open the prematurely fused sutures in her skull and had multiple incisions made in her skull to allow it to open up preventing pressure on her brain and to create a more 'normal' shaped head for her. Thanks to the incredible team at Alder Hey and the Paediatric Neurosurgeon Mr Parks, Grace's surgery and hospital stay was a success and she was discharged only 3 days after surgery. All of the staff at Alder Hey were incredible and a huge support to us as a family. 

Just over 7 months later and we are preparing to celebrate Grace's first birthday! She has been through such a lot in her first year and has demonstrated so much strength for such a little person. Her scar has healed and the memories of the stress and upset her diagnosis and surgery caused have started to fade; however so many other families will currently be going through what we did and many more in the future, Headlines provides continued help and support to these families, raises awareness and education and supports research.