Sutton’s journey with CHaD started a little over a year ago when, out of the blue during a normal childhood illness, she started acting strange. We went to urgent care, where her condition quickly deteriorated. We ended up rushing to the ER at Concord Hospital where it was found that her blood sugar was dangerously low. Thanks to the amazing and quick work of the ER, Sutton was stabilized. It was only after that we realized the extent of what had happened. Her blood sugar had dropped to 17, which is right around the level of going into a coma. For days, we were in the hospital with Sutton still having a hard time recovering. For days, we had doctor after doctor come in with a million theories and a million tests. They all came back without answers. Finally, Sutton recovered and we were able to go home. While we so thankful that our little angel came through this no worse for wear, we were terrified not knowing what had caused this, how to treat it, or whether it was going to happen again. When we were discharged, we were recommended several time to meet with Dr. Filiano at CHaD. Every doctor that we talked to seemed to know about him and they all seemed to treat him with a sense of reverence; they all said that he was the doctor we needed to see. Forget Boston they said, he’s the one you need.
A few weeks later we were able to meet with Dr. Filiano. For the first time since Sutton got sick, we felt a bit of relief because we felt that we were talking to a doctor who really understood what might be happening and who really might have answers. However, the mystery was not easy to solve. Over the next 6 months we saw Dr. Filiano numerous times, had MANY tests done (including 24-hour EEG, inpatient MRI/MRA/MRV, purposely letting her blood sugar crash to get specific blood and urine labs, genetic testing, etc.). Nothing gave a clear diagnosis. During this time, we were terrified (in a literal keep-you-up-at-night terrified sense) of many of the really horrible diseases and disorders for which she was being tested. Also during this time, Sutton was repeatedly hospitalized in Concord with Dr. Filiano remotely giving all of the care instructions to doctors at that hospital.
Finally, almost 6 months after everything started, we received a diagnosis of exclusion (ketotic hypoglycemia). This disorder is not widely understood but we are lucky with this diagnosis compared to all of the alternatives, because Sutton will live a happy, healthy, and amazing life! While we have to take some extra steps to watch her blood sugar, and we have to go into the hospital for IV fluids on occasion, we are extremely happy that Sutton will likely outgrow this condition in a few years! We’ve all settled into a good routine and she’s handling everything so well. We are truly blessed!
Throughout this experience, we faced many horrifying potential diagnoses. While we were fortunate that all of these tests came back negative for our daughter, we were heartbroken to think that for some families, this is not the case. To imagine anyone else going through these horrible conditions made our hearts break. We saw little glimpses of it with kiddos in waiting rooms we shared or beds near ours in the hospital. It’s hard to think that innocent, amazing kiddos (and their families) are battling things that are so unimaginably difficult.
What I decided is that I’m going to put my energy to use for kids like Sutton, which brings me to the CHaD HERO bike ride. In browsing online, I stumbled across the ride. It seemed like a perfect fit! I had just been given a hand-me-down road bike and, while I had never really ridden more than a couple of times in my life, I knew that I wanted to do this ride. I wanted to do it because I am so grateful to CHaD. I am thankful that we had world-class doctors available who could help us navigate through a really scary time in our lives. I also want to do ANYTHING I can to help those families who did not get the amazing news that we did.
To be honest, I was afraid of the $500 minimum fundraising goal for the bike ride. However, the outpouring of support was immediate and humbling. In a few short days, we reached the fundraising goal due to a few generous donations from family, friends, and coworkers who all were by our sides through Sutton’s ordeal. They all knew what we went through and they wanted to help others on their own journeys. I hope my ride supports kids like Sutton on their path to healing.
– Scott DeRoche