Making this House a Home
Most parents would say that parenting is one of the hardest jobs out there. Throw in complex medical conditions and the definition of “hard” changes dramatically.
For Michael and Dianne Kennedy, parenting their medically-complex child, Tyler, meant they had to become experts on his multitude of conditions while trying to juggle careers and the three-hour drive (one way) to receive the care Tyler needed. His diagnosis includes Eosinophilic Esophagitis [a type of white blood cell builds up in the lining of the tube that connects your mouth to your stomach], Gastroparesis [a condition in which your stomach cannot empty itself of food in a normal fashion] and a number of environmental allergies. The road to diagnosis wasn’t easy.
Michael and Dianne have spent most of Tyler’s childhood running tests, eliminating approximately 90% of what children typically eat, more testing, and an assortment of medications. Tyler was not able to eat, and he developed GERD because of the condition and was unable to grow. The Kennedy’s traveled to many different children’s hospitals to see if they could get hope for Tyler’s future. Finally, when Tyler was eight years old and weighed only 42 pounds, they found hope with Dr. Barry Steinmetz at Miller Children’s & Women’s Hospital Long Beach, when he diagnosed Tyler with Eosinophilic Esophagitis. The family could now focus on treatment.
Tyler’s doctors began with steroids to help control the condition which works in 85% of children. It didn’t work on Tyler. The next step was to start eliminating more than 20 foods, including milk, dairy, nuts, shellfish, gluten and eggs. That didn’t work. Next, all foods had to be eliminated from his diet, and a feeding tube had to be surgically placed to provide all his nutrition. Adding new foods requires an endoscopy every six to eight weeks to make sure his body is not reacting to them. The process is slow and arduous.
In the midst of their medical adventures with Tyler, Michael and Dianne welcomed a baby girl, Audrey, to the family. They needed help because driving from Bakersfield to Miller Children’s every six weeks was a huge financial burden. Dianne was nursing and wanted to be by Tyler’s side, but they couldn’t afford to pay $150 a night for a hotel room. Dr. Steinmetz told them about the Long Beach Ronald McDonald House (LBRMH) and for the first time in years, it felt as if a weight had been lifted off their shoulders.
“We are both teachers at a Christian school and don’t make a lot of money,” says Dianne. “When we walked through the doors we breathed a sigh of relief. In addition to the many amenities of the House, and its close proximity to the hospital, access to a kitchen was the most important because we have to make everything by hand for Tyler’s specialized diet. We are so grateful for this House and how it allows us to really focus on helping Tyler.”
The Kennedy family continues to utilize the LBRMH during Tyler’s hospital stays. This year, they are featured as the 2016 Walk for Kids host family. Would you like to hear their story first-hand and walk with them? Visit www.walkforkids.org/longbeach to register your team and see all the wonderful people who help make this House a home.
