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  • Writer's pictureGrace

Jace's Story

On July 26, 2018, Jace was born. While he was expected to weigh close to 7lbs, he surprised everyone by weighing only 5lbs 13oz. Everything was fine until 3 weeks later when he stopped gaining weight and began choking on breastmilk. He was considered "failure to thrive" at just 3 weeks old.

Multiple swallow studies were done before doctor's discovered he was aspirating and couldn't be fed orally for safety reasons. For the next 2 months of his life, he had an NG tube, which his parents had to insert.

2 months later, Jace became stronger and started fighting the NG tube, pulling it out, throwing it up multiple times per week, and vomiting after every feeding.

Jace then got involved with ENT to have a bronchoscopy done. An ENT is a medical specialist that specializes in the disorders of the head and neck, including the ears, nose, and throat. A bronchoscopy is a procedure in which a thin tube is passed through the nose or mouth, down the throat, and into the lungs. From the bronchoscopy, Jace was found to have a cleft in his voice box. In an attempt to fix this, Jace was given botox in his voice box. This did not help, and instead caused him to lose his voice for 2 weeks. At just 4 months old, Jace couldn't make noise when he cried.

Jace then had another swallow study completed with hopes to begin oral feedings. To everybody's devastation, doctors said that Jace was looking at a long term feeding tube. A gtube was then placed and his parents were met with a whole new slew of stresses including formula trials, caloric intakes, and insurance.

When Jace was 5 months old, he was rushed via ambulance from his pediatrician's office to the hospital PICU (pediatric intensive care unit) due to a cold that ended up collapsing his lung. He was sedated and intubated for 3 days while the doctor's ran tests and waited for him to regain the strength to breathe on his own.

Doctor's ran an EEG, MRI, CT scan, and full vital screen. The vital screen showed that Jace had a cold virus called coronavirus. The MRI and CT scans showed an abnormal brain. Jace was then sent to pulmonary and neurosurgery.

After multiple sleep studies, Jace was found to have central and obstructed sleep apnea. Since then, he has been on oxygen while he sleeps.

Jace was then tested with a genetic test. 5 months later, they received a diagnosis.

In June of 2019 - almost a full year after he was born - Jace was diagnosed with PPP2CA related disorder. Jace is the 16th individual in the nation to be diagnosed with PPP2CA related disorder. If you google PPP2CA related disorder, you will find only scholarly articles with complicated language that does little to educated you with facts about the diagnosis. Imagine being Jace's parents.

Since his diagnosis, Jace has begun occupational therapy, weekly checkups, and physical therapy.

Speaking to Jace's parent's, you would never guess what their little family has endured. With positive attitudes and nothing but kindness, JR and Jessica act as superparents.

Jace is now 13 months old. He has Global Developmental Delays, PPP2CA related genetic disorder, bilateral Polymicrogyria, Microcephaly, dysphagia, silent aspiration, GERD, Central Apnea and Obstructive Apnea. He is also clapping, sitting up unassisted, and beginning to roll over. He loves his momma, daddy, and big brother Jaxson.

I'm going to quote Jace's mother Jessica here because I know I cannot do it justice,

"You never think it will be you that ends up with a special needs child, but I of course can't imagine life without him. His incredible dimpled smile, belly laughs, crazy hair, sweet snuggles and beautiful deep brown eyes that seem to stare straight into your soul make all the hardships, daily struggles and worries float away."

JR and Jessica, thank you for trusting me to capture this milestone in your lives and letting me experience all the things that makes Jace the goofy and loveable 1 year-old that he is. I can't imagine what you are going through or what you've been through, but you are doing an incredible job. Jace's life is filled with love and I think that's obvious from these photos.

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