Being a nurse is an occupation that can be difficult and stressful anytime. For Jennifer Cox, caring for patients in a hospital setting during a pandemic and worrying about affected teenage twins at home takes a lot of courage.   Jennifer, who lives in the Pittsburgh area, follows all of the precautions but concedes that being a nurse in these uncertain times came be scary.  “I work in a neonatal intensive care unit (NICU), and we have a tight control on infection as baseline, because our littlest of littles are considered higher risk”, Jennifer said.   “I follow hand washing protocols.  I wear street clothes into work, change there into scrubs and change back into street clothes before returning home.”   Even with all of the precautions, Jennifer is always mindful of potential exposure and the danger it could pose for her family.  “If I really had a strong suspicion that I have been exposed, I would then make the decision to self-isolate for 14 days, staying away from my family,” Jennifer said.  Thankfully, isolation has not been needed.

Jennifer’s sons, Jesse and Jonah, are 16 years old.  When Jonah was 14 months old, he weighed 14 pounds and had serious issues tolerating eating and hypoglycemia.  That is when Jennifer first heard about mitochondrial disease.  The list of complications between Jesse and Jonah can be daunting.  “We have dealt with hypoglycemia, seizures, asthma, GERD, failure to thrive, severe allergies, autism, ADHD, hypotonia, dystonia, abnormal brain MRI’s, migraines, and fine and gross motor ataxia, among other things,” Jennifer said.   Only recently, they learned that a skin biopsy conducted on Jonah when he was younger showed a complex 4 and 1 deficiency.  They still do not have a specific diagnosis.

Jennifer’s involvement with the UMDF began with a Google search about mitochondrial disease that led her to our website.  “It was like a beacon of hope,” she said.  Jennifer and the boys immediately became volunteers.  “The boys and I started helping with the Energy for Life Walkathon in Pittsburgh.  The walkathon is a way to help and give back for all the support, research and resources that the UMDF has helped our family, and so many others, ” she said.   Jennifer says the walkathon connects the family to a purpose in helping to ensure that research is moving all patients closer to a cure.

As we continue in these uncertain times with extra precautions being required, Jennifer’s advice to patient families is one of hope.  “We have a purposeful schedule every day that includes time for exercise, safe social distance walks, school, daily chores, and time for our bucket list tasks,” she said.