3 minute read
Meet the Witherspoon Family - Jessica, Andru, Jaya, AJ & Jasmine!
By Christina McGairk
Many parents look forward to expanding their families. Valparaiso natives Jessica and Andru Witherspoon are no exception. First, they had their daughter Jayla, who is 10, then came AJ, 7, and lastly Jasmine, who is 5.
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According to Jessica, her pregnancy with her second child, AJ, went without a hitch. She had her usual ultrasounds and was screened for chromosomal abnormalities. The results always came back fine. Yet, things took a turn after AJ’s birth. “At delivery, we found out AJ was born with Down syndrome along with some other medically complex conditions,” she said.
One of those conditions is Anorectal Malformation, also known as imperforate anus. According to the National Institute of Diabetes and Digestive and Kidney Diseases, anorectal malfunction is a birth defect that doesn’t allow the anus or rectum to repel waste or stool properly. “At just 3 weeks old, he went through reconstructive surgery and he’s now had over a dozen surgeries since,” said Jessica. On top of the conditions already mentioned, AJ also has a Neurogenic Bladder. John Hopkins Medical Center describes this as a malfunction in the brain signals that alert the anus and rectum to release. He also was born with two holes in his heart, which have recently healed, and hydronephrosis. In AJ’s case, it means around-the-clock catheterization care for him.
All of AJ’s diagnoses place him under the VACTERL umbrella. The acronym stands for vertebral defects, anal atresia, cardiac defects, tracheo-esophageal fistula, renal anomalies, and limb abnormalities. According to AJ’s mom, a patient who has at least three of these characteristics falls into the VACTERL category.
Despite all of AJ’s life-long conditions, the Witherspoons have taken it all in stride. “We have found the best way to overcome the challenges is through education and advocacy” Jessica said.
Jessica, who works as a parent support advocate at IN*SOURCE and sits on the board of directors as a parent representative for the Indiana Division For Early Childhood, believes her years of experience working in the disability community have strengthened her need to stress the importance of advocacy to special needs parents. “My advice to others who have had similar challenges would be to further educate yourself on the conditions and the options available, and DON’T GIVE UP!”
The Witherspoons have received help along their journey from various organizations like Hannah’s Hope and Chasing Dreams, which provides tools, resources, and support for special needs families.
AJ’s conditions have caused some physical delays. He started crawling and walking later than his peers and experienced “jello legs” when he started walking. He also encountered communication delays. According to Jessica, AJ really wasn’t into talking for a long time and would use American Sign Language instead. Recently, he’s started to use his verbal communication skills.
Even through all their struggles, the Witherspoons couldn’t be prouder of their son. “This is a big accomplishment for him as we have witnessed how incredibly hard he has worked up to this point,” said Jessica. “He can now express his wants and needs, which is all we could ask for.”
As for AJ’s future, what his family wants the most for him is pretty simple; to have a voice. “Our vision is that AJ be allowed to make decisions for himself with the proper support in place.”
To learn a little bit more about AJ’s journey and others who are living with similar conditions, check out the book entitled Rare and Resilient: One in 5000 Anthology (Imperforate Anus/ Anorectal) on Amazon.
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