Having all granddaughters in one family can put an intense strain on any grandpa. He doesn’t have anyone to share Sunday football with or practice catching a baseball or to simply share the secrets of life that all grandparents have acquired over their lifetime. That’s how it was for the Watson family with four granddaughters: Kayla, Courtney, Isabella, and me. Little did we know that everything would change when my Aunt Barbara shared the news of her pregnancy. Nine months later our first boy was born, Cooper Roy Watson.
If there was ever a definition of perfection, that precious little boy was it. He was always so cheerful and had that contagious baby smile on his face all of the time. He had the sweetest little laugh and could brighten even the worst of days. When he was born his sister, Isabella, wanted to call him Cooper “Snowflake.” No one knew why she had chosen this name, but it stuck.
December came and he got sick at the age of only seven months. We were unaware of the hard times to come. Shortly thereafter his motor skills started to deplete. He had been able to hold himself up and stand, but we noticed these things that had come so easily to him started to be more of a struggle. Cooper could say only a few words and one of them was my name. His eyes shook sometimes almost as if his eyes would click like a pinball hitting against the sides of the arcade game and we could tell he couldn’t see very well.
Cooper could not be diagnosed initially, but after many tests, the doctors concluded that it was called Leigh’s disease. It was a rare mitochondrial disease that had no cure or treatment. The doctors told us that all of his deteriorating locomotives were because of this disease. After two weeks in the hospital, God decided it was time for Cooper to “go home.” It was a week before his first birthday. I pray that no one has to ever witness the death of an infant or child.
I guess we figured out why Isabella called him, “Cooper Snowflake.” Nothing perfect can last forever, just like a snowflake. Cooper came from God and was taken just as fast as a snowflake melts, just quick enough to reach the earth and then it’s gone.
After Cooper’s death, Barbara and Jarrod decided to have another child. On May 15th, 2013 Isla Elizabeth Watson was born. She was so beautiful and seemed like a perfect little angel. I will never forget the night I had brought their oldest daughter, Courtney home from a football game and Barbara was crying. Barbara started to sob and said Isla’s eyes had started to shake like Cooper’s that day. We were devastated but hoped and prayed for the best.
Our biggest fears were confirmed when they made the journey to Houston to see a Leigh’s specialist. The MRI showed lesions just like Cooper. The specialist sent home all this medicine for Isla to take. They were told DNA tests had to be done in order to find out what kind of Leigh’s and to decide if there was another plan of action. Isla would have to take bitter medicine in her food. They would spoon food in and then quickly stick her bottle in her mouth after each bite to make sure she swallowed it all.
The next visit to Houston was planned on Feb. 4th. The MRI already showed lesions on the brain stem. Isla Elizabeth Watson lost her battle with Leigh’s disease on April 8, 2014.
Help Us and the UMDF Find a Cure
The United Mitochondrial Disease Foundation (UMDF) was formed by families affected by mitochondrial disease. The UMDF provides support to families and funds mitochondrial disease research. Since 1996, the UMDF has funded nearly $11 million in research projects aimed at finding better treatments for mitochondrial diseases, with the ultimate goal of a cure. This research has increased the understanding of mitochondrial function, improved diagnosis and moved us closer to treatments and, ultimately, a cure for those who face this devastating disease.
Grants have supported research for one to three years at institutions across the United States, Canada, Europe, and Australia. Recently, projects have included studying what mechanisms in abnormal mitochondria cause muscle dysfunction, enzyme replacement therapy and other potential treatments, as well as developing models for specific mitochondrial disorders.
Mitochondria produce more than 90 percent of the body’s energy. When these tiny parts of the cell can’t do their job, the body doesn’t get the energy it needs, resulting in a wide range of debilitating and sometimes fatal symptoms. Every 30 minutes, a child is born who will develop a mitochondrial disease by age 10. Each year, 1,000 to 4,000 children in the United States are born with a mitochondrial disease. While exact numbers of children and adults suffering from mitochondrial disease are hard to determine, we now know the disease is approaching the frequency of childhood cancers. Many people who suffer from mitochondrial disease are frequently misdiagnosed due to a lack of specialists. This is why we need your support.