Hello, I'm writing to tell you how the Big House Big Heart 5K personally affected my family. I apologize for too much detail but felt it was important to provide some history as to our connection with Mott's Children's Hospital that led up to the race. My wife and I recently spent 8 nights and days at Mott's following the birth of our 2nd child, Jake William Boote.

Our son was born on Friday, June 29th shortly after 6pm, 2 days prior to his scheduled due date following a perfect pregnancy with no detected prenatal issues. He weighed 8lbs 15oz and appeared to be a perfectly healthy boy. We took Jake home for the first time on Sunday July 1st but then later that same evening quickly returned to the hospital due to our growing concerns over his lack of appetite and signs that he was becoming very lethargic. Within minutes of returning to the hospital our son suffered respitory failure and then later cardiac arrest as the ER and Neonatal staffs struggled to stabilize him and begin to determine his diagnosis. As he was stabilized and various tests were concluded over the next several hours, we learned that our Son suffered from a rare genetic disorder called OTC deficiency. This is one of, and the most serious form of, Urea Cycle Disorders that is thought to impact 1 in every 10,000 births.

Our son was moved to the pediatric ICU for dialysis where we spent the next 5 nights sitting by our son's side waiting for updates and praying for him to survive. We learned very quickly that our suffering was not unique. There were many families there fighting for their children's lives. This is something you know exists but can't fully comprehend until you have experienced it first hand with your child. We were very grateful for the care our son was provided from the many talented doctors and nurses at Mott's but it was obvious that the facilities were out dated and lacked adequate space for families to gather to provide updates to concerned friends and relatives that had stopped by. We also learned there is some much needed privacy with your child for every family while at the hospital which was difficult to get in the current facility. While we were there at Mott's you could see the beginnings of the new hospital taking shape and it was comforting to know one day there would be a better and brighter environment for children and their families when faced with similar struggles as ours.

While we feel we did receive the best care available at the time for our child it was not enough to save his life. We took our son home on Saturday July 7th. The next 3 days were beautiful and tragic all at the same time. Tragic because we could do nothing to stop the process of our Son's death way to soon in his life time. Beautiful because we would get to hold our son again many times, have him baptized in the lake that we live on with many family and friends present, watch his big sister start to love and bond with him, take him on a wonderful boat ride during a perfect sunset evening and just absorb every minute life would allow us to while he was here. Our Son died at home on Tuesday morning July 10th at just 12 days old.

We now realize that in some sense we were fortunate to have Mott's near by. We would later learn that most infants with early onset OTCD don't survive more than a couple of days. If you could only have 2 days or 12 days with your child wouldn't we all want the 12? I think about what if our son had died in the ER because the ER staff was not use to providing critical care to infants like has happened in so many of these cases? What if there had not been a neo-natal unit that could resuscitate Jake when his heart failed and work quickly to determine the need for dialysis? What if there had not been a team of genetic specialist's with pediatric experience that could diagnose OTCD within hours when it takes many hospitals months? What if there was not a PICU team that could provide the proper critical care as the fight to save our son's life continued? We know the answer to these questions now. We know the 3 beautiful days we had at home with our son would not have happened. We know that the pictures and memories from those few days would not exist. It might not seem like much to many but that is all we have and it we would not have been possible if not for the efforts of the staff in the ER, Neonatal and Pediatric units at Mott's Children's Hospital.

Even though our son is no longer with us we feel it is important to keep fighting for him and believe this fight will provide hope for other children and their families that need the best care a children's hospital can provide. I started running in part as a father's way to deal with the grief of losing a child and as a way to pay tribute to our son by helping to raise money for Mott's. This has started a very personal 12 race campaign, one for each day of our son's life, and it started with the Big House Big Heart 5K run. We came out with many friends and family to participate in this wonderful event. A part of us now feels very connected to this hospital and all the families that go through there. The run was a way for us to stay connected and to celebrate our son's life. This will become an annual event for our family that we will always look forward to. As a father and lifelong Michigan football fan it was exhilarating to sprint down the field toward the finish line with my daughter. To run down the tunnel onto the field and think about all of the great Michigan football legends that have been down there on so many football Saturdays was very exciting. Every year we make that run down the tunnel, onto the field and across the finish line in the future our son will be in our thoughts as will the children at Mott's and their families.

Thanks to Mott's and Running Fit for making that possible.
Dean, Beth & Grace Boote