In 1996, when D.J. DiSilva was 3 and a half years old, his speech abruptly arrested and his behavior began to change. What his mom, Annie, didn’t know at the time, is that their life as a family had just changed forever too.
In the late ’90s, early screenings, interventions and resources were not as easily accessible as they are today. Their first step after D.J.’s speech issues was meeting with his pediatrician, before bringing in various medical, educational and therapeutic specialists. Fortunately, D.J. began talking again, but his speech was delayed and their concerns about his development started to grow. When he was four years old, the DiSilva family began working with Dr. Murray Feingold, and very quickly, Dr. Feingold became a role model, confidante, and most importantly, an advocate and friend to D.J. His mother, Annie, acknowledges her appreciation for how much Dr. Feingold cared about D.J., his two brothers, and their entire family. She says, “I always appreciated the fact that at every appointment Dr. Feingold would take the time to meet with D.J.’s brothers. If they weren’t with us, he always asked about how they were doing and if they were facing any challenges and/or developments themselves. No matter what we happened to be discussing at each meeting—whether it was the most current educational challenges D.J. may have been facing, insurance roadblocks, lack of resources or therapies—we always seemed to leave feeling like a load was lifted off our shoulders.”
The DiSilva family and Dr. Feingold would work together for years, arranging a multitude of tests, x-rays, and exams, before ever receiving a diagnosis for D.J. It eventually reached a point where Annie and her husband were feeling pressure from the school system to have a diagnosis for D.J.’s IEP, and Annie recalls desperately pleading with Dr. Feingold to give them one. She says, “We went for an appointment with Dr. Feingold, and I explained that I NEEDED a diagnosis from him. After a long discussion, I still was trying to convince him to give us a diagnosis. Very calmly, Dr. Feingold stood up and said to me, ‘Annie, when you are ready to discuss therapies for D.J. instead of giving him a diagnosis just so the school can have it for the IEP, give me a call’, and he began to walk out of the office. I was so frightened that we had lost the best of the best for my son! I quickly jumped up to chase after him, and he was waiting for me right outside of the door. From that point on, I realized it wasn’t about the diagnosis, but giving D.J. the tools to have the best life possible.” It was then and there that Annie’s focus shifted to finding the right therapies for her son. Therapies like horseback riding, which was introduced to D.J. by The Genesis Foundation for Children when he was four years old, and his lessons continue to this day.
Eventually. the DiSilva family would receive an official diagnosis for D.J: Autism; Anxiety; Developmental Delays; Other Health Impaired. Finally getting those answers gave Annie a better understanding of D.J.’s world and began providing the family with more resources. The Feingold Model of Coordinated Care, which Dr. Feingold pioneered in 1982, made a tremendous impact on their medical journey. Annie explains, “it involved open communication not only with us as a family, but [Dr. Feingold] also reached out to other doctors in D.J.’s life, as well as various therapists, educational professionals, therapy providers, and even insurance companies. If Dr. Feingold could find a way to advocate for us and assist in making our journey a little easier and less complicated, he was there! It was always obvious that his passions were not only with his patients, but with their families as a whole.”
Today, D.J. is 31 years old and has evolved from being a non-verbal child at one point in his life, to a young man of few words that are “chosen wisely and always truthful.” He is an active member of society and of his local Y.M.C.A, he has held the same part-time job at Keene State College for 12 years, and is a master in the art of creating sterling silver jewelry. He also loves to garden and even uses his homegrown tomatoes to make his own tomato sauce!
As Annie reflects on those first years with Dr. Feingold and The Genesis Foundation, she acknowledges that the resources and guidance they received were immeasurable and continue to leave a positive impact on their lives almost 27 years later. She says, “Although DJ isn’t a patient anymore and Dr. Feingold is no longer with us, the impact of his work and his legacy is still very much alive through The Genesis Foundation for Children. We are so very proud of him, and we know that he has had an amazing support system along the way that has helped him to get where he is today, and that includes everyone from the Foundation. So, thank you to The Genesis Foundation for always making the children feel as if they are all that matters, for taking the time to get to know not only the children, but the entire family, and for guiding us and providing us with useful resources that will last a lifetime. For these reasons, and so much more, we appreciate all that you do!”
If you would like to make a donation to The Genesis Foundation in honor of Dr. Murray Feingold, you can do so by clicking here. Please help us continue the work he started 42 years ago for children just like D.J. who are living with a rare disease or genetic disorder diagnosis.
