Our family of three became the family of four that we had prayed for on July 5, 1996. Our beautiful, loving five year old daughter Jenna was so excited to finally be a big sister and we truly believed that all of our hopes and dreams had come true the day that our son Sam was born.
From very early on I noticed things that did not seem right. He had many colds and ear infections even as an infant, and we could hear him snoring from three rooms away. As a worried mom I brought these concerns to the attention of his primary care doctor at the early appointments. When he wasn’t holding his head up or reaching physical milestones appropriate for his age, again I expressed my concerns.
I was told that I was comparing him to my daughter who had done everything extremely early, including walking just shy of nine months.
No, that wasn’t it. I had a “mother’s instinct” that something was wrong and I could feel it in my bones. When Sam’s primary doctor said that his head circumference was large in relationship to the rest of his body at his four month checkup we were sent to a neurologist. Sam was given a clean bill of health and although I knew I should be happy I still had that terrible feeling that they were missing something.
At the six month checkup I insisted that Sam go to a specialist, and as luck would have it that doctor was Murray Feingold! Murray immediately noticed facial features prevalent to MPS and knew just the right x-rays and tests to perform to lead us to the type of MPS and final diagnosis.
What was MPS? We had never heard of such a disease and neither had many people in the medical field! I thank God every day that we were sent to Dr. Feingold, a genius in the field of genetics that knew what MPS was, and diagnosed it early enough for Sam to receive the treatment that was imperative for him to get before the age of fifteen months. Not only was Murray knowledgeable, but he was kind and compassionate and actually cared about what we were going through as parents. This skilled doctor and caring man not only led us to a diagnosis that most were not aware of in the year 1996, but he found the best place to have him treated. He found the hospital 1400 miles away in Minneapolis, MN with the doctor that had pioneered the only treatment available for MPS1/Hurler Syndrome at the time.
This treatment (because there still is no cure today) would be a bone marrow transplant, and Sam would undergo chemotherapy and full body radiation to kill off his own healthy bone marrow. MPS1 is a disease where you are missing an enzyme, and without that enzyme there is storage in all of the organs and bones of the body causing early death between the age of two and ten. He would get the enzyme through new bone marrow, and it would carry it to all of the major organs, but not the bones. Dr. Feingold suggested testing Sam’s sister Jenna since a sibling match is the best, and she was a perfect match! Sam had the bone marrow transplant just after his first birthday, out in Minnesota. The hospital and Ronald McDonald House became our home away from home.
We met many families that had children with Sam’s disease that had gone undiagnosed for several years, going from doctor to doctor trying to find out what was wrong. Again, we thanked our lucky stars for Dr. Feingold’s early diagnosis! Some of these children lost their lives waiting for diagnosis and then a donor, and others never had the opportunity for cognitive development as Sam did, due to being diagnosed late. The first year was tough with the worry of germs and Sam being in and out of the hospital with fevers that were scary. We had come back home 100 days after transplant and began acclimating to our “new way of life.” I would not be going back to work, and due to the number of doctors that Sam would be followed by we would spend quite a bit of time going back and forth to Boston Children’s Hospital.
That is where Dr. Feingold and the Genesis Fund stepped in again, making our lives just a bit easier. Murray chose all of Sam’s doctors (the best in their fields) to follow him for a variety of health issues that would be ongoing due to having MPS. Sam would have many orthopedic problems and surgeries ahead, in addition to being followed by cardiology, pulmonology, endocrinology, vision and hearing specialists, ENT’s and oncologists. Murray and his staff helped manage Sam’s health care by making various appointments on the same day to save us from making more trips than necessary to Boston or Waltham. We used to kid Murray that any time we heard of anyone that knew a child with a health problem that doctors were having a tough time figuring out we would tell the person “You have to call Dr. Feingold. He is a medical genius! He will diagnose them!” We told him that if he was getting “over booked” we may be partially to blame, and I’m sure there were plenty of patients that did the same!
At the beginning no one was sure if Sam would ever be able to read or be in a mainstreamed classroom due to both his disease and the radiation that he had received to his brain at such a young age. When Sam wrote papers in school that he got A’s on (a couple were about Murray and how lucky he was to have him as a doctor) he would bring them with him to show Murray! He would read passages out of books to show him how well he was reading. When he was inducted in to the National Honor Society he could not wait to tell his “favorite doctor!” Imagine a doctor as busy as Murray that takes the time to not only be interested in what is going on in your life personally, but one that will sit and read your papers!! He was about as special as they come, and we are not looking forward to walking in to the office that will not have the man with the tanned face and big smile behind the door waiting to see us! We became involved with the Genesis Fund immediately after Sam’s diagnosis, appearing on telethons to share our story and spread the word about our hero Dr. Murray!
Sam enjoyed many YAZ DAY outings at Fenway Park, and a very special weekend on Martha’s Vineyard for the John Havlicek Fishing Tournament. We attended many other functions sponsored by the Genesis Fund, and prior to Sam’s spine surgery he had the opportunity to take therapeutic horseback riding lessons for a few years with the help of this great organization. As much as a void will be felt without Dr. Feingold, he always surrounded himself with the best people and the most caring and knowledgeable staff.
We know that superb care will be ongoing at The Feingold Center and that his legacy will live on as everyone involved with The Genesis Foundation will continue his life’s work of making life better for children with special needs and their families. Our life is definitely different because of Sam having MPS and our “norm” is not like everyone else’s, but we still believe that all of our hopes and dreams DID come true on the day Sam came in to this world, and the fact that he is healthy and still with us is thanks to Dr. Murray Feingold!