Jack is 4 years old and he is a tiny little hero! He has an undiagnosed genetic disorder, which has limited his ability to walk.
Jack loves dinosaurs, super heroes and his family.
Around 8 months old, Jack’s mother and family started noticing things being… off. They noticed his eyes made a sort of clicking movement when they rocked him as a baby. His mom mentioned it to the pediatrician, not overly concerned but thinking it was worth mentioning. The doctor suggested Jack’s eye twitch was a nystagmus. The doctor asked a few questions, like if she had noticed anything else unusual. Jack’s mom, Jenna, said she was concerned about his milestones such as sitting independently or rolling around, which is typical behavior for about 4-6 months old babies. Jenna wasn’t overly concerned because Jack’s older brother was slightly behind on his milestones and it wasn’t anything too alarming to be a few months behind. But she was concerned since her oldest, who didn’t walk until closer to 20 months, was still sitting independently by 8 months. With some slight concern, they were referred to a neurologist for some further evaluation.
Jenna began to worry. When the doctor mentioned the referral, she began to wonder. “Will my son walk? Or talk?” She was overcome with emotions. Jenna made the appointment and began the extensive investigation into her baby’s delayed development. First test was some blood work, followed by an EEG, MRI, and more blood work. After several tests, Jack’s parents finally received a diagnosis of Congenital Disorder of Glycosylation. This diagnosis is so rare that the neurologist didn’t even know what to tell Jenna. Jenna was told that babies with this diagnosis rarely live past he one. Jenna was given some websites and direction to learn more about Jack’s condition.
The geneticists have been unable to locate the specific gene associated with this rare genetic disorder so Jack is still theoretically considered undiagnosed.
Jenna says, “We don’t know what he has, or why his body works differently than ours do…. I mourned the little boy I thought I had, who he should be or the life we were going to have. I was so excited for my sons to become best friends. Everything changed that day. I knew they would go through life together and become best friends, it was just going to be different than the life I had imagined. That’s exactly what it is when you receive a diagnosis for your sweet baby or child. It isn’t the life you imagined. It’s different and different is ok.”
My tiny little heroes always have incredible mothers and fathers supporting and accepting them! Jenna created a social media page to find and support other parents of children with different needs. Jenna is incredibly inspiring. She is halfway in the process of building an all ability’s cafe in Provo, Utah. It is still in the beginning stages, trying to find a building to buy and build this wonderful play area for children with different needs. It will be called Jack’s Play Cafe.
Jack’s Play Cafe is an indoor play space for all ages and all abilities. We will have imaginative play, sensory room, reading lounge & more. Parents can come sit on a comfy couch or cafe table to work, relax, or chat while their child plays in a clean, enclosed play area. We can’t wait to play!!
@jennagines @jacksplaycafe
#thisnewlifeofmine #differentneedsmomma
#jacksplaycafe
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