Cranio Angels

The Cranio Angels Team at the Shamu & You Family Walk

The birth of your daughter is one of the most memorable moments of your life. Having her be diagnosed with craniosynostosis shortly thereafter is also unforgettable. That was the diagnoses for Avery Grantham, and after two major Cranial Vault Reconstructions to release the fused suture in her skull, she is thriving.

Shortly after birth, the shape of Avery’s head seemed “off” to Sheila Grantham, Avery’s mother. Pushing the doctors to investigate further, they ordered an MRI, which lead to a CT scan. After meeting with Craniofacial Disorders Fresh Start Clinic, she was diagnosed with Coronal Craniosynostosis. At just 6 months old, they cut Avery’s scalp from ear-to-ear and reconstructed her skull in order for her brain to grow normally. It was a major 4 hour surgery with a Craniofacial Plastic Surgeon and a Neurosurgeon. At two and a half years old, she had to have another similar surgery to repair soft spots along her sutures.

There are a roller-coaster of emotions you go on with a child with Craniosynostosis, and by relating to other families who have been there, it can be less overwhelming.

With all the support Avery and her family received from other Cranio families, they decided to give back and start the Cranio Angel Network (CAN) in 2010, just months after Avery’s first surgery. It started as a way to reach out to these families by sending the girls handmade flower headbands and the boys pirate hats to help cover their ear-to-ear scars. Within months, CAN had reached hundreds of Cranio families all over the world. CAN offers guidance, support and a network of families to connect with to help them through their journey.

Wanting to do more, they decided to partner with Rady Children’s Hospital to create the Cranio Angels fund. This fund raises money to help families with the large out- of-pocket expenses associated with such a major surgery. In two short years, the Cranio Angels fund has raised more than $23,000. Largely due to the success of their Shamu & You Family Walk Team, which was awarded the largest community team in 2011 and 2012,  averaging 200 team members! In addition to this fundraising, the Cranio Angels have held a Sammy’s Night Fundraiser, and more recently hosting Curtsy for Cranio at Xtend Barre.

In the future, the Cranio Angels hopes to create a heightened awareness for Craniosynostosis, because oftentimes the diagnosis is missed in well-child checkups. The hope is to educate more Pediatricians and families on what signs to look for in the shape of children’s heads to ensure that no child is missed. The earlier the diagnosis, the more optimal treatment options are available.