Denise & Jackson
Hi. My name is Denise Ozoonian. I am honored to be running the 2017 Boston Marathon as part of the Credit Union Kids @ Heart "Miles for Miracles" Team. This group was established in 1996 to raise money for services received by children and families at Boston Children's Hospital.
I have been partnered with an incredible little boy by the name of "Jackson". He is both my inspiration and motivation as I train for this life changing event. I am grateful that I was chosen to run for Jackson, his mother Danielle, his father John, and his two sisters Lila & Sophia.
I had the pleasure of meeting Jackson recently. He is your typical energentic little boy. His infectious smile lights up the whole room. He is quite a charmer.
It was a little over 3 years ago, that Jackson suffered a massive ischemic stroke to the right side of his brain. Only 17 months old, Jackson was fighting for his life. He had been diagnosed with Moya Moya disease. Meaning "puff of smoke" in Japanese, the disease inflames the blood vessels in the brain to compensate for an inadequate blood supply, making them resemble a clouded shape. The disease affects 1 in 1200 people.
Jackson underwent an invasive brain surgery called pial synongiosis, a procedure that was paramount for his survival. Danielle, (Jackson's mother) explained "that pial synongiosis is a brain surgery to restore the blood flow to the brain. It takes arteries from one's scalp and plants them into the brain to take over and begin growing. It works to compensate for the arteries that are goint to close off and die as a result of Moya Moya disease.
Fast forward to October 2016. An angiogram showed that the new vessels are growing beautifully, and are taking over for the arteries that are closing off.
Thanks to the life saving research at Boston Children's Hospital, I would never know the struggles that Jackson has had to overcome. I just see a vibrant, playful, brave and beautiful little boy. Jackson still has a long road ahead of him. This reminds me of some of the things that matter in life, things like joy, resilience, awe, connection, gratitude, love, compassion, giving and possibility.
There are 21 passionate runners who are bound by a desire not only to conquer the 26.2 miles, but also to make a difference in fighting childhood diseases. So please, help me to help Boston Children's Hospital to keep writing the greatest children's stories ever told.
Please help me raise money for this vital research. 100% of these funds go directly to research for Moya Moya disease, Sturge-Weber Syndrome, Pediatric Brain Cancer and Cerebral Palsy. This research is key to finding a cure, and funding this research is essential.
As I continue to train, you will all be with me in spirit, and your sponsorship will inspire me to run stronger to the finish line. Every step I take, I will be thinking of "Jackson" and the countless children that need our help. We are, and will always be stronger together.