Hi everyone,

I’m David, this is my 18 month old son Maxwell (aka Max, Maxy, Maxy boy). Max was born with Apert Syndrome, a rare genetic disorder which affects roughly 1 in 65,000 births. He is the bravest, most resilient person I know, and is my inspiration for the challenge.

After a routine pregnancy, Max was born 5 weeks premature. It quickly became apparent that there were complications, as he had to be resuscitated soon after birth, and placed on a ventilator. 

The doctors advised that he had a malformed skull/face (craniosynostosis - the premature fusion of the skull), a cleft palate, and fused hands & feet. His diagnosis was subsequently confirmed after genetic analysis.

Max was in the special care unit for just under 4 weeks, but has since gone from strength to strength! To date he has had three surgeries; a posterior vault expansion of his skull, to allow room for his brain to grown, and two hand operations to separate his fingers.

We have received great support from Headlines since Max was born, the charity has put us in touch with other parents who have children with Apert Syndrome, which has enabled us to learn what to expect about their development, surgeries, and any general day to day questions. All funds raised go towards helping this amazing charity to raise awareness, and support families like mine.

Thanks for taking the time to read my story. Please feel free to reach out and ask any questions about the above, I strive to raise awareness, as education will help to reduce the impact of this condition.

I am also grateful for any donation that you can give, and also ask if you can share with your networks to help spread the message and further raise awareness.

DC.