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My Story

Alex is a smart, kind, big-hearted, animal-loving, 15 year-old boy. He just so happens to also be autistic, diabetic, have a connective tissue disorder with orthopedic involvement, and is epileptic. In April of 2017, Alex began having bouts of chronic pancreatitis. Pancreatitis is very rare in the pediatric population, and due to this statistic, the initial diagnosis was very difficult, and ultimately finding treatment-even more difficult. After many obstacles were overcome, Alex began treatment at Cincinnati Children’s Hospital at their Pancreas Care Center. Ultimately, after almost a year of constant hospitalizations, the inability to eat, and being in excruciating and debilitating pain, Alex was the 26th pediatric patient to have TPIAT surgery.

A total pancreatectomy with islet autotransplantation (TPIAT) is a major surgery (Alex’s was over 16 hours) and involves surgically removing the pancreas, spleen, gallbladder, appendix, a portion of the small intestines, reconstructing the GI tract, and transplantation of the insulin-producing islet cells to the liver.

The recovery process after TPIAT surgery is intense. A feeding tube is utilized for nutrition, an insulin pump is used to provide exogenous insulin, daily chemotherapy is required to control and maintain blood cells, multiple therapies are involved, pain specialists are needed, and medication is given-around the clock. For any child this process is traumatic, but for Alex-it was the ultimate of sensory overload!

After surgery, Alex unfortunately endured one of the many possible complications of abdominal surgery-bowel obstruction! This required an additional emergency surgery, and additional time in the ICU. Due to these complications, Alex was hospitalized in Cincinnati for approximately 6 months. Throughout this critical time, Alex was accompanied by his faithful service dog, Ling (a Chinese Crested). The bond that Alex and Ling have is indescribable and like no other. Due to Alex being on the spectrum and his difficulty with many social situations including advocating for himself, medical communications/interactions, and coping with scary and painful medical procedures, Ling was a God-send! Alex like many people, actually has a fear of needles. If you can imagine, this is the worst type of phobia for a chronically ill child to cope with. Ling’s intuitiveness and their inseparable bond was definitely our salvation.

Alex’s recovery was difficult, and unfortunately the transition back home, and back to school was even more difficult. In addition to Alex being socially awkward, he had already missed two school years. This made making friends even more difficult than for the average child. In addition, Alex continued to have many medical issues, such as pain, gastric/motility issues, fatigue, and nausea. Unfortunately, Alex’s service dog Ling was retired due to old age and declining health, but after being assaulted by a bully at school, resulting in a fractured foot, and causing emotional havoc; we went a different route-we bought a horse!! Alex acquired Dixie, a 13 year-old Quarter Horse from my friend Amber Bartow of Four Arrows Ranch. After realizing the bond that Alex had with her mare, Amber agreed to let us begin riding her. Alex was a natural! Not only did we notice a psychological difference in him, but his gastric motility improved-drastically! We were thrilled, as were his doctors (he has shown so much improvement with motility, a colostomy bag has been avoided). The power of animals truly blows my mind!!

Alex would like to ride dressage-competitively. The fact that he would like to take riding to a different level is thrilling-for all of us, especially because of his history. In pursuit of following his dream, a local and very well known dressage trainer was contacted, and we began to reach out to the dressage community. Because of the extreme generosity and assistance of an internationally recognized equestrian athlete (who has a heart of gold and is truly an inspiration), a spark has been ignited in Alex, and his journey has begun!! His first dressage lesson was on September 2nd with Linda Fritsch of Oleo Acres. Linda is absolutely phenomenal and has worked with riders of many levels, disciplines, and with disabilities (she has trained multiple paralympians). We are blessed and absolutely thrilled to see where this journey leads!!

Too often our struggles make us question hanging on or just simply giving up.  It is hope that acts as a spark and gives the power to believe that anything truly is possible.  Please share Alex's story because his scars could be someone else's sign of hope.  

 

Thank you for your interest, love, and support!