Alex was the much anticipated little brother of Jonathan. Shortly after he was born his mom and dad, Joanna and Mark, began to have concerns for their second little boy. He seemed to have some hearing loss, he didn’t respond when the dogs barked, and he didn’t make eye contact with people. At about 7 months of age, he developed severe feeding problems and was initially diagnosed with failure to thrive. This began a yearlong process of trying to find out why Alex wasn’t thriving. Alex underwent many tests and he and his parents visited many specialists. Alex developed seizures and constant vomiting. He became so sick his digestive system could not tolerate any food so he received TPN, a method of supplying all the nutritional needs of his body by bypassing his digestive system and dripping a nutrient solution directly into a vein. When Alex was 18 months old he was diagnosed with chromosomal abnormalities. It is also suspected that he has mitochondrial disease.
Despite Alex’s complex medical issues, Joanna and Mark have been determined to give him as normal a life as possible. Alex is now 8 years old. He will be starting the second grade in September where he spends half of his day receiving extra help and half of his day in a typical class. Alex loves school. He also loves all kinds of electronics and music and he is involved in his church. Alex shares an interest in bee-keeping with one of his teachers and his mom says he is the life of the party, a real ham and entertainer!
Alex’s parents take advantage of the Home Based Palliative Care program at Nationwide Children’s Hospital as a way to help manage Alex’s symptoms and provide him with as normal a life as possible. Joanna says she appreciates most the 24/7 access to experienced nurses and the support of the social worker. “Knowing I can call a nurse that knows Alex anytime I have a question or don’t know what to do really gives me peace of mind and Karen, the social worker, is such good support. She comes out about once a month and I can talk with her about the challenges Alex’s illness raises for our family. It can be especially hard for his brother who doesn’t really understand why Alex can’t play with him as much as he would like. Palliative Care has been really helpful for our family.”