I joined the MILES FOR MIRACLES team because I believe so strongly that EVERY single part of our daughter Victory's life is a MIRACLE! And there is no better way for us to say thank you to each and every person who has prayed for us, and continues to pray for us, whether its one prayer or a million prayers. There is no better way to say thank you to Victory's Boston Children's Hospital NICU team, every single EMT and transport team, the PACT team, the CAPE team, all of the attending doctors, nurses, nurse practitioners, specialist doctors, therapists, surgeons, the front desk, administrative staff, custodians and cleaners (past, present, and future) who played a HUGE part in each and every one of those MIRACLES.

I want to run EVERY MILE of this prestigious marathon to give families like ours, and other children, like Victory, the chance at the very same MIRACLES that our family and Victory has experienced because of everyone at Boston Children's Hospital. I am running so that Boston Children’s Hospital can continue to make sure that every child can be given the life-saving intervention that they deserve. I am running so that others can learn and know that Trisomy-13 does not have to be a death sentence. It does not need to be considered “Incompatible with life.” I am running for ALL of Victory's friends at school, all of her other trisomy friends and families! I am running so that, just like Victory, these and others can have VICTORY over Trisomy-13!

Here is Victory’s Story: Our sweet, precious, angel girl, Victory Rose was born on July 19, 2019 and was immediately taken away from us before my wife could even look at her, or either of us being able to hold Victory for the first time. The delivering doctors and team in the room brought her straight to the Framingham MetroWest Hospital’s NICU, and shortly after, transported her by ambulance to Boston Children’s Hospital. The only reason we were able to give birth to Victory at Framingham was because of a very instrumental doctor, Dr. Urato. He was the only one who gave our daughter a chance.  The other hospitals we went to refused care for Victory solely based on the prenatal diagnosis of trisomy 13. It was only at the recommendation of Dr. Urato that Framingham allowed us there. He came up with the plan to transfer us to Boston children’s if needed. Once we were at Boston Children’s, the Genetics team confirmed thru a blood test the diagnosis of “Trisomy-13.”

Children with Trisomy-13 are said to have a very short life expectancy and/or life with many physical, and intellectual challenges. Because of this diagnosis alone, hospital after hospital not only turned us away from delivering our baby there but also refused to perform any and all life saving interventions during the delivery. All, except ONE – Boston Children’s Hospital! From the beginning, they said they would do whatever we wanted, and we wanted FULL intervention! Children with Trisomy-13 are labeled “incompatible with life” and we were told she would not make it to her first birthday, never know us as her mom and dad, never know her brother, never experience joy, laugh, smile or show any emotion at all, that she would never grow, get strong or even hit any milestones. We were told she would be a burden on not only us, but her big brother also. Well, these labels and misconceptions couldn’t be more wrong. Yes, Victory has had her physical challenges and has had to deal with more than most children; she most certainly knows her mom, dad, and big brother. She has the most beautiful smile we have ever seen and her laugh is the most contagious we've ever heard. She’s a fighter, a warrior, and she has the Victory!

In her 3 years of life, Victory has had 11 surgeries to date – 2 of them were life-saving. Some children with Trisomy-13 don’t get that opportunity to receive these life saving surgeries. Some are denied solely based on this specific diagnosis! But thanks to Boston Children’s Hospital, she was given the chance to live. At 2 months old, she received a trach and at 6 months old she had open heart surgery to repair an ASD which was causing life-threatening Pulmonary Hypertension and a heart arrhythmia. Other surgeries included glaucoma surgery, hip surgery, and g-tube surgery. She has overcome so much already in just the 3 years that she’s been alive! She is thriving! Her life and her story will be able to touch millions because her life is our MIRACLE and she is our VICTORY!  

With all that said, I am running to show how thankful we are to Boston Children’s for everything they did and even still continue to do for Victory –including setting us up with Franciscan’s Children’s Hospital where she spent 2 more months in preparation for home, helping us find THE BEST trach and vented experienced pediatrician in the world, helping us get set up with Maxim nursing, and connecting us to Early Intervention which led her to an amazing school, where she currently attends as an official preschooler!! 

I’d love for you to support me, our Victory and support the best, and ranked #1, hospital in the world. This hospital is where Victory went for answers and got them! She went for answers and got her life back, the life of VICTORY that she deserves, ALL because of Boston Children's Hospital! 

Please make a gift today.

Brian and Victory Rose Downey