Dear MTM/CNM Community,

Those who knew our Leo can tell you stories of a little boy who loved fiercely. Like any lion, he knew how to pounce. Not in a literal sense, of course, as Leo was just learning to walk in a gait trainer. But Leo could pounce like no other, right into your heart.

Leo’s name first entered our household a few months after he was taken into DSS custody. His life started out with pains no child should ever endure. He entered the world on July 18, 2012. With a disease unbeknownst to his family at the time, Leo was left alone in his crib for 16-20 hours a day. Bottles lay within his reach, but he lacked the skills to feed himself between the age of 0-3 months. Fortunately someone noticed Leo and contacted the authorities. But our little Leo had to fight to live as doctors determined he was 24-48 hours from starvation. His skin hung off his body and bedsores were revealed on his back. A gruesome diaper rash covered his baby bottom. The images are truly haunting and came to us with graphic warnings.

Leo fought and was placed in foster care with his older brother. His foster mom saved him. She showered him with love, feed him with care, and held him with hope. Yes, he faced hospitalizations and illnesses. But he fought with determination and strength that none of us have ever seen. Leo’s last South Dakota hospitalization occurred in March 2014 and John flew to be with him in early April. Upon John’s arrival, the doctor told him that Leo would never move again and that we should enjoy whatever time we had left with him. By the time I arrived 19 days later, Leo was on room air and pushing himself around the ICU halls on a ride-on toy! The doctors were amazed. We were permitted to bring Leo to our home via a commercial airline flight on April 25, 2014. The day before we flew him home, a geneticist told us Leo had MTM.

Leo’s brother joined our family four days after Leo and within a week, Leo was hospitalized. What should have been a feeding tube swap turned into a 4 month stay. We learned about our new son in the confinement of a children’s hospital. We gradually began to realize exactly what having a neuromuscular disease meant. But it didn’t affect our love. 

Over the past year, we worked with specialists and therapists to provide care for Leo. We struggled with home nursing. We learned medications, equipment, and insurance. We continued the social worker visits required to foster/adopt our boys. During this time, we also welcomed our third boy, Leo’s biological baby brother. Life was certainly busy during the past year! We experienced illnesses, specialist visits, and the constant threat of something going wrong. But we also experienced unconditional love and lots of laughter. Leo and his two brothers officially became our adopted sons on July 31, 2015.

Our Leo was feisty, stubborn, and playful. He loved to say no (especially “No, Mama” when he saw Mom reach for the suction machine). He enjoyed reading books and couldn’t get enough of them! Leo had a passion for anything water related and had recently told us that he wanted to help dolphins. He loved animals, movies, fire trucks, and the zoo. Most of all, he loved his family and his home. His brothers, Gabe and Eli, are young but are very much aware of their brother’s absence.

The days before Leo’s passing were full of hope and optimism. Leo had begun cruising the ICU halls in his manual wheelchair. He told us which direction he was going and he stopped to get cups of ice on his way. He was throwing toys out of his bed and laughing. We used Hot Wheels tracks as a therapy tool and he would lift the track as high as he could so the cars would fly into the ICU hall and attract attention. Doctors and nurses were amused and we were told during rounds how cute Leo was and how well he was progressing.

So, on November 18, we felt it was okay to leave him for one day. Mom had a work conference and Dad was teaching. It was Mom’s birthday. Dad called the hospital to check on our little boy and received a good update at 12:46pm. Less than 2 hours later, our Leo earned his angel wings.

To those families that still have your boys, hug them. Cherish them. Spoil them. Kiss them. Squeeze their cheeks. Read to them. Take pictures of them. Advocate for them. Love them.

Love them like we loved our Leo.

Sincerely,

John & Nicole