Inaugural Post

On Monday, April 19th, Garth will be running in the 115th running of the Boston Marathon as part of the Children's Hospital Boston Miles for Miracles Team. Our reason for getting involved is two-fold: one, we hope to give back to an institution that has given so much to us and other families like ours, and two, since embarking on a running campaign last January, finishing the Boston Marathon has become Garth's dream.

Most who know us are familiar with everything that Children's has done for our younger daughter Ali, but what many don't know is that our relationship with CHB actually began with our older daughter Maya. By the time Maya was a year old, she had formally been diagnosed with FTT, or failure to thrive. For reasons that were never quite clear to any of us, she just didn't like to eat. We had been seeing a pediatric gastroenterologist through Baystate Children's Hospital, but after being told it was simple reflux for months on end with no improvement, we decided to make the jump from there to the Department of GI and Nutrition at Children's.

Having grown up in the Boston area, this felt strange, to say the least. After all, Children's was for kids who were really sick, not my child; however, this proved to be the best decision that we could have made. Within months, Maya was diagnosed with something called gastroparesis, which essentially meant that her stomach did not process food as it should. She was started on low-dose erythromycin as a treatment, and for the first time ever, she began to show interest in food. We felt vindicated; she wasn't FTT because of our failure as parents, but because of something that we couldn't do anything about. It was during this time that she was also diagnosed through the Department of Cardiology there with an atrial septal defect like her father, paternal uncle, and paternal grandmother.

Then came Ali. Within weeks of her being born, we knew that something wasn't quite right. She wold choke and turn blue while eating, and was easily the most miserable baby I had ever seen. To say she slept poorly and cried frequently would be a gross understatement. Thankfully, we already had a relationship with Dr. Rosen, the fabulous GI who had diagnosed Maya, and we were able to get Ali seen when she was just six weeks old.

At that point, her misery was blamed on severe gastroesophageal reflux, and she was put on high doses of multiple reflux medications. She was also seen by cardiology and like her sister (and father, and uncle, and grandmother), was diagnosed with an atrial septal defect. As a result, it wasn't long before Dr. Brown, the girls' cardiologist, and Dr. Rosen, their gastroenterologist, felt like members of the family.

When Ali was six months old, we started to undersand that something more was going on. In addition to reflux medications, Ali was started on laxatives because she could not have an independent bowel movement despite being exclusively breastfed. I went on a strict elimination diet (think nothing but plain chicken and potatoes) in hopes of being able to provide her with the best nourishment possible, but nothing seemed to help. An abdominal x-ray showed that her colon was distended to nearly the size of an adults, and she was admitted for what would be her first of many intestinal clean-outs.

In the meantime, our repertoire of specialists also expanded. The abdominal x-ray showed dislocated hips, which introduced us to Dr. Kasser in the Department of Orthopedic Surgery, and routine growth appointments indicated her head was growing too quickly, which introduced us to Dr. Smith in the Department of Neurosurgery and Dr. Anselm in the Department of Neurology. Over the next four years, this list would grow to include otolaryngology, pulmonology, allergy and immunology, complex care services, and opthamology. During this time, Alison has endured multiple major surgeries, a number of smaller ones, a multitude of tests, and too many hospitalizations.

I wish I could say that our relationship with Children's is now limited to philanthropy, but unfortunately, that is not the case. In June of 2009, Alison was diagnosed with mitochondrial disease, a devastating and progressive neuromuscular disease for which there is no treatment and no cure. As a result, we rely on her doctors at Children's more than ever as they work to not only keep her alive and well, but to assure that she has the best quality of life possible for as long as she will be with us. Even though her primary metabolic doctor is at a different facility, it is her doctors at Children's who provide her with the day to day care that keeps her going.

I know that these are difficult financial times for everyone, especially in consideration of the holidays that are quickly approaching, but if you have it in you to support Children's in their care of our girls and the thousands of other children like them, and in Garth in his dream to run the Boston Marathon, please visit Garth's fundraising page at https://howtohelp.childrenshospital.org/bostonmarathon/pfp/?ID=wg0021 . And even if you aren't in a position to make a donation, please feel free to join us on April 19th as we cheer Garth on!