Hi, Jack.
Jack was just six months old when he passed away from Spinal Muscular Atrophy (SMA). He is why Feeding Littles LLC is here today. His 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. Judy and Megan love helping families feel great about their feeding journey, and we thank Jack for allowing us to live out this dream.
More about Jack, from his strong, graceful mama 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. We named him Jack.
A few days after his birth, we started to notice 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. Jack started eating less and less and had trouble breathing when he cried. I decided we couldn’t wait for the appointment with the specialist. We went to the ER immediately. After a week stay in the hospital, and many tests, Jack was diagnosed with the #1 genetic killer of children under 2, Spinal Muscular Atrophy or SMA. My husband and I both carried the gene responsible for SMA. We were told he had the most severe type and had just 6 months to live. Six months. Our world fell apart. This couldn’t be happening. We were going to lose the most precious thing in our world. The future we thought we had, was no longer. Before Jack’s diagnosis, I had never even heard of Spinal Muscular Atrophy. But I am 1 in 40. My husband is 1 in 40. 1 in 40 people who walk this earth carrying this disease.
After a 2 week stay in the hospital, we were sent home to care for our terminal child. 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. That is how we met Judy. She was such a breath of fresh air. She taught us how to keep Jack comfortable, brought adjusted toys for him to play with, and created a customized feeding plan. Judy worked with Jack several times a week and each time she was full of tips and ideas to fit his own specific needs. Judy allowed me to feel like a mom again. Jack had a feeding tube quite early on; however, he tasted 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, just in his own way. Judy quickly became a large part of Jack’s life and a very close friend. I will never be able to fully thank her for giving me a piece of motherhood I may never of 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 cheek. All while carrying oxygen tanks, feeding bags and suction machines with us. 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 as they slowly closed.
We celebrated Christmas early that year with family and friends. We opened presents with Jack, taking in each moment. On 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.
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. Judy and Megan love helping families feel great about their feeding journey, and we thank Jack for allowing us to live out this dream.
More about Jack, from his strong, graceful mama 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. We named him Jack.
A few days after his birth, we started to notice 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. Jack started eating less and less and had trouble breathing when he cried. I decided we couldn’t wait for the appointment with the specialist. We went to the ER immediately. After a week stay in the hospital, and many tests, Jack was diagnosed with the #1 genetic killer of children under 2, Spinal Muscular Atrophy or SMA. My husband and I both carried the gene responsible for SMA. We were told he had the most severe type and had just 6 months to live. Six months. Our world fell apart. This couldn’t be happening. We were going to lose the most precious thing in our world. The future we thought we had, was no longer. Before Jack’s diagnosis, I had never even heard of Spinal Muscular Atrophy. But I am 1 in 40. My husband is 1 in 40. 1 in 40 people who walk this earth carrying this disease.
After a 2 week stay in the hospital, we were sent home to care for our terminal child. 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. That is how we met Judy. She was such a breath of fresh air. She taught us how to keep Jack comfortable, brought adjusted toys for him to play with, and created a customized feeding plan. Judy worked with Jack several times a week and each time she was full of tips and ideas to fit his own specific needs. Judy allowed me to feel like a mom again. Jack had a feeding tube quite early on; however, he tasted 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, just in his own way. Judy quickly became a large part of Jack’s life and a very close friend. I will never be able to fully thank her for giving me a piece of motherhood I may never of 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 cheek. All while carrying oxygen tanks, feeding bags and suction machines with us. 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 as they slowly closed.
We celebrated Christmas early that year with family and friends. We opened presents with Jack, taking in each moment. On 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.
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A few weeks after Jack was diagnosed, I opened a small apparel shop called Jumping Jack. During Jack’s life, we had so many people jump in to help, delivering food, doing errands, raising money etc. that we wanted a way to give back and help others who are in need. Today, we create graphic tees to raise funds and help loved ones going through loss, illness or other life changing events through our fundraiser apparel called Threads of Heart. Jack is the inspiration behind what we do each day.
I often have strangers who have followed our story reach out to me starting with “Because of Jack..”. His short life has touched so many and his reach is unending. There is nothing more beautiful than that.
Jumping Jack Apparel: www.jumpingjackapparel.com
Instagram: @shopjumpingjack
Email: shopjumpingjack@gmail.com
SMA Facts:
1 in 40 people unknowingly carry the gene responsible for SMA.
It is the #1 genetic killer of infants and young children.
SMA hinders the ability to walk, stand, eat, swallow and breathe.
On May 24, 2019 the FDA approved Zolgensma, a gene therapy product intended to treat children less than two years of age with spinal muscular atrophy.
***If you would like more information about SMA please visit www.thegsf.org and watch this video https://www.youtube.com/watch?v=osPYUVGB_aw ***
I often have strangers who have followed our story reach out to me starting with “Because of Jack..”. His short life has touched so many and his reach is unending. There is nothing more beautiful than that.
Jumping Jack Apparel: www.jumpingjackapparel.com
Instagram: @shopjumpingjack
Email: shopjumpingjack@gmail.com
SMA Facts:
1 in 40 people unknowingly carry the gene responsible for SMA.
It is the #1 genetic killer of infants and young children.
SMA hinders the ability to walk, stand, eat, swallow and breathe.
On May 24, 2019 the FDA approved Zolgensma, a gene therapy product intended to treat children less than two years of age with spinal muscular atrophy.
***If you would like more information about SMA please visit www.thegsf.org and watch this video https://www.youtube.com/watch?v=osPYUVGB_aw ***
Judy, Sarah and Megan - May 2015