Feeding Littles was inspired by an amazing baby named Jack. Jack was just six months old when he passed away from Spinal Muscular Atrophy (SMA). Jack’s mother, Sarah, connected Judy and Megan in 2014 and forever changed their paths.
Jack had such an impact on the world in his short time on earth. He has inspired so much love, creativity, and dream-chasing hope. He taught us to stop waiting and do what we love, right now. Jack never got the chance to eat real food, but his legacy has helped thousands – even millions – of families worldwide build memories at the table.
From Jack's mom, Sarah
From the moment I found out we were pregnant with our first child, we dreamed of the beautiful future we would have. The day I held him in my arms for the first time was the best day of my life. I instantly fell in love with this little being. I loved his bright blue eyes, his sweet smiles, how he gazed at the world with such wonder.
A few days after his birth, we noticed Jack could not move his muscles like he should. He began to have trouble nursing and always seemed tired. Our pediatrician referred us to a Neurologist, however, our appointment wasn’t for a month. I decided we couldn’t wait for the appointment with the specialist and went to the ER immediately. After a week stay in the hospital, and many tests, Jack was diagnosed with Spinal Muscular Atrophy (SMA). We were told he had the most severe type and had just 6 months to live. Our world fell apart. We were going to lose the most precious thing in our world.
We were sent home to care for our terminal child after 2 weeks in the hospital. Jack required 24-hour care and multiple machines. He was fed through a feeding tube, on oxygen, and required suction and cough machines since he had lost the ability to swallow. Jack also received Occupational and Physical Therapy, which is how we met Judy.
Judy was a breath of fresh air and taught us how to keep Jack comfortable, brought adjusted toys for him, and created a customized feeding plan. Judy worked with Jack several times a week and finally allowed me to feel like a mom again. Jack had a feeding tube early on, but he experienced the taste of apples and peaches and enjoyed getting flour on his hands while making pizza dough.
We were reminded that Jack was still a baby and loved doing things all babies do. I will never be able to fully thank Judy for giving me a piece of motherhood I may never have had.
Each day was a celebration with Jack. We made him a bucket list of all things children love. We brought him to the zoo and the aquarium, we took him hiking and sledding. We let him feel the grass between his toes, and the rain drops on his cheeks. We had a birthday party each month and celebrated most holidays a few weeks early, not knowing which would be his last. He slept by our side each night. I loved holding his hand and staring into his eyes.
We celebrated Christmas early that year with family and friends. One December 23rd, Jack took his last breath in my arms at just 6 ½ months old. He was surrounded by family and love. We donated Jack’s organs in hopes he could help save a life. We were so lucky to have had this beautiful boy a part of our lives, but would have given anything to watch him grow up. He is truly the strongest person I know.
SMA hinders the ability to walk, stand, eat, swallow, and breathe.
- 1 in 40 people carry the gene for SMA
- #1 genetic killer of infants and young children
In 2019, the FDA approved Zolgensma, a gene therapy product for the treatment of spinal muscular atrophy for children under 2 years of age.
Support for Spinal Muscular Atrophy
Spinal Muscular Atrophy is a cause close to our hearts and we are so grateful to Jack for bringing us together and inspiring Feeding Littles. Feeding Littles is a very active supporter of organizations involved with SMA research, family support, and education.
SMA Research advocacy and support
Feeding Littles donates a portion of all course sales to the Gwendolyn Strong Foundation, a Spinal Muscular Atrophy not-for-profit organization. The Gwendolyn Strong Foundation works to provide practical family support, fund SMA research, and is building the first inclusive playground in Santa Barbara.
Food Access for Families
Food insecurity is a reality for so many families. Feeding Littles is an active supporter of: