Boston's Cranio Adventure
Meet Boston...our amazing son, who just turned three. He loves reading books, riding his bike and playing in the ocean. His birth was pretty well the most amazing event of our lives, but his life has not been all milk and cookies.
It has had all too many specialist appointments, enough therapy to make your mind numb, one major head surgery down and another just around the corner. So in two weeks we are flying from our home on Gold Coast to 'The Australian Craniofacial Unit' in Adelaide, where Boston's skull will be taken apart, rearranged, then put back together again. This is Boston's story...
Boston was born with a rare genetic syndrome called Saethre-Chotzens. In his particular case this means there is a deletion of several genes from his DNA.
One symptom caused by Saethre-Chotzens is Craniosynostosis. The skull of most newborn babies is separated by several plates with sutures (fiborous joints) in between. Sometimes one of more of these sutures are fused, this is called craniosynostosis.
Although there are varying degrees of the condition, Boston's case is quite severe. As the brain grows in early childhood it pushes in any direction possible to create space, when part of the skull is already fused there is a big problem.
Left untreated craniosynostosis can result in raised intracranial pressure, visual impairment or blindness, headaches, sleeping problems, cognitive delays and brain damage.
Boston had his first surgery at the tender age of 8 months, but multiple operations were always a possibility. This year a routine check found Boston has raised intracranial pressure. His brain is running out of room. It is literally pushing against his forehead and beginning to decend into his spinal colomn.
So we will be travelling as a family in just a few weeks to The Australian Craniofacial Unit in Adelaide. There, a world renouned team of specialists will complete surgery that will allow Boston's brain to grow and our special little guy to thrive.
We are a mix of emotions, excited to have such a wonderful team looking after our son and nervous to see him face another major surgery.
If you would like to help Boston on his cranio adventure you can give love, kisses, well wishing and donate here. Funds will go towards ongoing travel expenses, specialist appointments and the Craniofacial Australia Foundation. Boston's condition will be a lifelong journey, we are unsure of exactly where it will lead him, but we are confident that under the care of his wonderful team Boston will grow to be the best version of his perfect self.
Any funds raised over our goal will be donated to the Craniofacial Australia Foundation.
'Boston's Cranio Adventure' has been such a beautiful success. We feel so blessed to have so much support and a huge sense of relief that his September 2015 operation is completely funded. This fundraiser will stay open, and as promised any funds raised over our $10,000 goal will be donated to the Craniofacial Australia Foundation.
We are still in awe and completely humbled by the generosity of those who could give and the effort everyone has put in to share Boston's story.
Any funds raised over our goal will be donated to the Craniofacial Australia Foundation. This amazing organisation was founded by Professor David in 1984 and supports research, treatment and care associated with craniofacial anomalies. They have pioneered treatment in Australia while nurturing a culture of compassion and excellence.
We have often wondered what Boston's future would have been if he had not been born at this point in history. This excerpt from a recent interview with Professor David paints a pretty heart breaking picture of what life would have been like only a few decades ago. He speaks of returning to Australia after study in France.
"At the time, he says, no one in Australia was operating on complex craniofacial cases, and so babies and children with severe deformities were left largely untreated. Many went blind, developed brain damage and died young.
Those who survived were often ostracised and held in mental institutions, despite there being no accompanying mental impairment."
We feel so grateful that there are people who have dedicated their lives to pursuing the very best treatment for children like Boston, and we are so excited to keep sharing his story and building support for this amazing foundation.
Once again thank you for your support. You all ROCK !!
A massive MASSIVE! thanks to all who've shared and supported my sons campaign, ya'll sure do know how to pull on a grown mans heart strings. What a way to kick things off in as little as 24 hours!! No doubt Nell Gow will be posting blogs on Bostons progress for those who want updates. http://nellainspired.com/2015/09/09/the-art-of-receiving/.. Thank You xo