Jeune Syndrome and Zachary’s Story

“Roll with it and enjoy it!”

Jennifer is one of our ACP Moms and her message of encouragement needs to be shared! Zachary has been part of our
ACP family since 2016 and we are fortunate enough to be able to follow his journey and to see him overcoming challenges.

Thank you Jennifer for your inspiring words. Enjoy the reading!

Zachary is a funny, spunky, smart, active, and sweet 3-year-old kiddo. Zachary has a genetic disease called Jeune Syndrome, which only affects 1 in 130,000 people worldwide. Jeune Syndrome basically causes the rib cage not to grow like it should, as well as causes long bones in the arms and feet and the legs to bow. Due to the rib cage not growing like it is supposed to, Zachary has VEPTR rods (titanium ribs) in place of his actual ribs to allow for growth and expansion. Due to Jeune Syndrome, Zachary has also had his trach, vent, and g-tube for a little over 2 years; however, we are currently doing ventilator weaning.

Like many trach parents, we had LOTS of questions in the beginning and weren’t sure if Zachary would be able to do “normal” things other children can do. Let me assure you, THEY CAN!

Zachary jumps on a trampoline, rides riding toys, swings, goes to school, pretends to be a WWE wrestler and body slams his 14 year old brother on the couch, walks around, and sometimes rides in the wagon at his Nana and Papa’s farm to check out the animals (Rowdy the Donkey and Hamburger the Bull are his favorites).Zachary also walks outside the house to sit on his Pop’s Motorcycle when he visits. Also, Zachary dearly loves his cat, Princess Poppy, and indoor dog, Bubbles.

At first, we were really weary of many things that we do, such as bathing in a bathtub,  but it’s one of those things that you work up to and you are always cautious of water around the trach. We have also taken Zachary to a Sesame Street Concert at the Infinite Energy Center and places like Dollar Tree where there aren’t a lot of people, but not during cold and flu season or under shelter in place. We just make sure his team of doctors are ok with these things and we are mindful of people and germs when out.

Our next thing we are working up to is taking Zachary to the beach for the first time, which hopefully will be next summer.

Having a kiddo with a trach can be life-changing in many, many ways, but it’s also one of those changes that you roll with and make the best of, even on the crazy days. Don’t be intimidated by having a trach, vent, and g-tube, although they can be terrifying. But you can still do everyday things with them. Regardless, we just have to do things a little bit differently and with a “few accessories.” Just have a plan, stay organized, have lots of backup supplies, and charge everything, while keeping the power cords on hand. Then, roll with it and enjoy it!


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