Aria's fundraiser for Craniosynostosis

On 1st of March 2023, our beautiful daughter Aria was born,

Aria was born with a rare condition called Apert Syndrome. Apert Syndrome is cause by a change in the FGFR2 gene & effects 1 in 165,000 births.

A key feature of Apert syndrome is the premature closure of the bones of the skull (craniosynostosis). This early fusion prevents the skull from growing normally and affects the shape of the head and face. In addition, a varied number of fingers and toes are fused together (syndactyly).

Craniosynostosis alone effects 1 in 2,500 births.

Aria had an operation at 11 weeks to remove her fused sutures to allow the head to develop & grown. Aria is now receiving helmet therapy treatment & will wear a helmet until she is 12-18 months old. Aria also had an operation at 16 weeks for her first release of her hands, this will be done over 3-4 separate procedures.

Aria will receive lifetime treatment for Apert Syndrome & is currently a patient of Royal Hospital for Children who have been amazing!

As September is Craniosynostosis month, I would like to give back to this amazing hospital and charity.

If you are able to make any donation, no matter how small. It would be appreciated.

#Craniosynostosis #Apertsyndrome