Imagine your 9 year-old going to school, eating, let alone sleeping with this cumbersome device that forces his skull and bones into position from the outside. Imagine yourself having to adjust the screws on this “metal arc”. And all that for a period of three months, day in, day out.

It’s a daunting experience. But had it not been for research, we don’t know what the future would have held for our little David…

One week after David’s 10-day check-up, world-renowned neurosurgeon Dr. Jose Luis Montes of the Montreal Children’s Hospital told us David had Crouzon syndrome, a rare genetic disorder that causes an infant’s skull and facial bones to fuse early, impeding normal bone growth and posing a severe threat to the brain.

David had his first operation when he was a month-and-a-half old to separate his cranial bones and he underwent a second operation at eight months old so his brain and face could grow properly.

But even though he had been through so much, another invasive surgery awaited him, a risky one… David would need to get his midface advanced. Surgeons would have to remove bones from his face as well as small pieces of bones from elsewhere in his body so they could graft everything back into place. The risks included a serious infection or meningitis.

But as the time for his surgery approached, we received some incredible news.

Thanks to research funded with the help of donors, there was now a less invasive procedure called a “monobloc distraction,” with much less risk to David. It was to be performed by Dr. Mirko Gilardino, who had returned to the Children’s after completing subspecialty training in complex craniofacial surgery at the top-ranked Children’s Hospital of Philadelphia. He was the first surgeon in Quebec to perform this procedure on a child with Crouzon.

https://www.youtube.com/watch?v=TOYTmHDU-ds

Imagine our relief!

Today, David is thriving and full of self confidence. All this because of individuals who invested in research. You can give a future to more children and their families by making your gift to the Montreal Children’s Hospital.

Thank you,

Tina & Franco