DAILY LIVING & MOBILITY

Strongest Baby Bear With A Rare Disease There Ever Was

Rare Disease & Syndrome

Kassy Stuart

Showing us all who Kenai Is: Not Just A Rare Disease

At less than 24 hours old a woman in the NICU pulled my husband and I aside & told us things were not right with our son. She motioned to her head & insinuated there was something majorly wrong. Our baby boy, Kenai, was born 5 weeks early & weighed in at 3 pounds 15 ounces, which shocked us all because my belly was rather large. We learned at birth this was due to high fluid.

Kenai's Diagnosis: Chromosone 7q deletion

Kenai was born with a cleft palate & heart murmur (we later learned he has 2 heart defects). We were told on Kenai's fifth day of life that he had a Chromosone 7q deletion, which is a very rare diagnosis. There have only been 34 similar cases reported. He is missing some genes on his 7th chromosome. When he was about a month & a half old he was life flighted to a larger hospital for a procedure on his heart. We spent the first 9 weeks of his life in the NICU & in that time saw lots of specialists, and heard plenty of predictions as to who, how & what our little man would develop into. We were told by numerous people he would have global delays, that he would possibly be non-responsive, not interactive, extremely fragile, etc.

Our Baby Is Not A Diagnosis, He Is Kenai

We decided from early on to remove negative energy from our circle & not allow them around Kenai, we have moved doctor's offices, told certain doctors or nurses we no longer needed their services, etc. We want him to know everyone around him knows he is amazing & we tell him daily. He is not a diagnosis, he is Kenai, and we will not label him as anything else. He is extremely happy, alert, interactive and pulls people towards him. He is such a light in our lives & has grounded our entire family. Showing & reminding us of the true importance in this world. We love watching his achievements and are taking everything day by day. He will soon be 10 months old, weighs almost 10 pounds, and will be undergoing open heart surgery within a month or so. We are all nervous, but excited to get this behind us. We love watching Kenai show us just who HE is, not what people see on paper.

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