“Dr. Thornton explained so many things to Joshua that no one else could explain. Diagnosis and treatment compared to 28 years ago is because of research. Research takes money. The more research that is conducted the better the odds for these kids to live happy, healthy lives." – Joshua’s Mom
Joshua, was born on 8-5-1989. We had him with us all day – so cute and calm – never fussy. We thought he was going to be a chill baby – little did we know he was lethargic because his blood sugar was dropping.
That night he seized, was intubated and was transferred to UTMB. They tried medications and one made him puff up like a baby sumo wrestler! He had IV’s that blew out and had to be moved – shaving part of his hair each time he literally came home with a Mohawk! After 4 weeks of a roller coaster ride of unknowns, he was diagnosed with nesidioblastosis. Years later the name changed to hyperinsulinism. We were told 5 years sooner he would not have survived.
We were blessed to find Dr. Pokorny at Texas Children’s Hospital who had performed a near total pancreatectomy before. They set up bleachers in the observation area. It went well and his blood sugar normalized. We went home 2 weeks later – Mohawk, hamburger looking feet from the heel sticks – and all!
In 6th grade, he became insulin dependent; he always dealt with it well and accepted the difficulties it brings.
Joshua is now 28 years old and is a graduate of Texas A&M and UNT. He’s a human resource manager, athletic, and engaged to be married!
We met with Dr. Thornton at Cooks Children’s after Joshua’s cousin’s baby – Melody – was born with HI in 2016 and was cured there. It was an amazing 1 ½ hours! He talked about the disease, genetic pattern and research. We were previously told it was not hereditary, something that just happened developing in utero. The endocrinologists Joshua has previously seen have not understood or known about this disease, treating him like a normal insulin dependent diabetic – but his situation is unique and the way his body reacts is different because of his minimal pancreatic tissue. Dr. Thornton explained things to Joshua that no one else could explain, and gave him advice on how to handle some problems he was having with his blood sugar lately.
Diagnosis and treatment compared to 28 years ago is because of research. Research takes money and although this disease may not affect as many families as a more common disease, the families it does affect are devastated. The more research that is conducted the better the odds for these kids to live happy, healthy lives.
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