KEITH'S STORY

Keith’s story starts with his birthday on August 6th, 2015. He was the first child for Aaron & Rachel Lewis.

During a prenatal scan, doctors found Keith had Cerebellar Hypoplasia. At the time, there wasn't too much of concern, but Rachel would need an MRI while pregnant with Keith and then he would need another one as soon as he was born.  

Keith's first stay at Nationwide Children's Hospital was shortly after he was born, in the summer of 2015, for his MRI and was a quick and short stay.  The MRI came back as expected and Keith was finally sent home to see his new room.  For the next three months, the Lewis family had a normal life with Keith.  They enjoyed the summer, went to the Zoo, went for walks and visited a pumpkin Patch. Keith enjoyed morning babble sessions with Rachel and nightly stories and rocking with Aaron. The 3 Lewis' were quite a team. 

 

At around 3 months old, Keith was having trouble feeding and not gaining weight very well . He was admitted again to Nationwide Children's Hospital in November of 2015. During his stay, a number of other tests were run and a few more abnormalities were found with Keith, including a heart condition, Left Ventricle Hypertrophy.  The doctors were sure it was a genetic issue and began running a number of genetic panels to determine a diagnosis.

 

After receiving a feeding tube and gaining a few pounds in the hospital, Keith was sent home on Thanksgiving Day 2015.  Keith was able to be home with Aaron and Rachel all of December and had a really beautiful Christmas and New Year's Eve.

On January 4th, 2016, Keith was back in daycare and Aaron & Rachel were back at work.  Keith had some type of episode that led to troubled breathing and him becoming very acidotic. The whole family took an ambulance ride down to Nationwide Children's Hospital.  The Emergency Room saved Keith's life that day.  From the ER, we were admitted into the Cardio Thoracic Intensive Care Unit (CTICU) because of his known heart condition.  The CTICU team was an enormous blessing to Keith.  

 

Nationwide Children's Hospital worked tirelessly to try to determine a diagnosis for Keith. Though many tests came back with no results, we were able to clinically determine he had a mitochondrial disorder. Keith was having issues storing and using energy properly, which led to his body having trouble communicating and taking care of itself.  

 

After nearly a month in ICU, Aaron & Rachel, along with some of the best doctors around, determined Keith's body was communicating multiple complications that unfortunately didn't have any medical solutions. Keith's body was no longer able to keep him alive and his sweet soul was stuck inside of a body that couldn't survive. 

 

Keith passed away in the arms of Aaron & Rachel on February 2nd, 2016 in the CTICU at Nationwide Children's Hospital. 

 

More than a year after his passing, Baylor University Genetics lab was able to match Keith’s genetic code to a recently discovered mitochondrial mutation.  It was determined that Keith suffered from an extremely rare genetic mutation of his MIPEP gene. 

While his story is unclear at times, one thing is very clear – LOVE. Keith was loved by not only his parents, his family and friends, but by the staff at Nationwide Children’s Hospital. We all were moved by Keith’s courage and will always remember his sweet soul.