“And let us not grow wearing of doing good, for in due season we will reap, if we do not give up.” (Galatians 6:9, ESV)
When Drake O’Sullivan was born, he was perfectly healthy. Drake passed all newborn tests with high scores and within 24 hours, he was released to go home with his parents. Eric and Tarah noticed he was a bit sleepy, but hoped that would change with time and rest.
But, on the third day after bringing him home, Eric and Tarah couldn’t wake him up for a midnight feeding. They tried everything, even dipping him in cold water. Drake wouldn’t wake up. They rushed him to the emergency room at Spartanburg Regional for evaluation and within hours Drake was transported by ambulance to Greenville Hospital’s pediatric intensive care unit. Due to Drake’s grim state, Eric and Tarah were asked to follow the ambulance in their car. They found out later that the transport team didn’t think Drake would survive the trip.
Five days later, after multiple blood and spinal taps, Drake was diagnosed with Non-Ketotic Hyperglycinemia (NKH). Due to the fatality rate, and the rarity of the disease, the O’Sullivans learned the devastating reality that there is no cure nor valuable treatment for patients with NKH. Drake spent 28 days in the PICU fighting for his life. Once he was able to breathe on his own, he was sent home on hospice. The O’Sullivans were told he would live only one week to one month more, and so they loved him, took care of him and waited.
“Our emotions would come in waves. We’d cry and then feel calm. It was a lot to process so quickly after him being born, but we had to try to understand all the doctors were telling us,” Eric said of his time in the PICU. “People would ask ‘How can you be so calm?’ and we would tell them ‘Drake is no different than anyone else. When God says his time is up, it’s up. And only He knows the hour.”
NKH is a rare genetic disease that prevents the body from properly breaking down the amino acid glycine. Instead, glycine accumulates in the body and floods the brain causing untreatable seizures. On really bad days, Drake has experienced hundreds of seizures.
“Fifteen grand mal seizures, or less, is a good day for him now,” said Eric.
The disease affects one in 76,000 newborns, which translates to about 500 children in the world. Its major symptoms are seizures, decreased muscle tone, lethargy and developmental delays. Drake is considered to have the most severe form of the disease.
A typical day for Drake involves being given medicine and food through a tube in his stomach almost every hour – sometimes every half-hour – around the clock. Eric and Tarah keep a detailed journal, writing down everything they do, as well as Drake’s responses to foods and medications. Tarah draws blood from his scalp once a week to send samples to the lab to monitor Drake’s glycine levels. Multiple family members come throughout the week to help as needed with Drake’s care.
“With all Drake’s therapies, doctor visits and school for the other kids, it takes a small army to make our home run now. I’m not sure how we would do it without the help of so many,” Tarah said.
About two months after Drake’s diagnosis, the O’Sullivans began to research NKH. They traveled to attend an NKH conference in Boston. It was there that they met researchers from the University of Notre Dame, Children’s Hospital in Colorado and London, England. After the conference, the O’Sullivans drove to Notre Dame and Rush University in Chicago to meet with Dr. Kalipada Pahan about joining in the research being done by the other scientists. Dr. Pahan, a scientist studying Alzheimer’s and other neurological diseases, agreed to extend his trials to NKH at no cost to the O’Sullivans.
Eight months later, the O’Sullivans established the Drake Rayden Foundation, a 501(c)3 non-profit organization for the purpose of spreading hope through the Gospel, raising awareness, promoting research and developing treatment for children living with the disease. They have partnered with three of the main research facilities in the world studying NKH and have brought in two new research centers since the foundation was started. To date, over $65,000 has been raised by the foundation for NKH research.
Recently, the Early Learning Center at The Mill conducted an auction to raise money for the foundation. Each class collected donations and created themed gift baskets that were auctioned off in-person and online. The fruit of the auction yielded over $10,300 to go towards research.
Drake is now two years old. “We knew that God had a plan for Drake. God allowed Drake to live so His glory could be shown,” Eric said. Drake suffers daily as the family races for a cure, but they are trusting God to continue to lay the footsteps.
In addition to the research funding, finding a cure for NKH may get a leg up from home. Because so few cases of Drake’s condition exist, Eric and Tarah have had to become very hands-on with Drake’s care and drawing awareness for the condition. In January, Tarah will begin pursing a degree in biochemistry with an emphasis in genetics in hopes of pursuing a Ph.D. This particular program at Clemson University was established two years ago, about the time Drake was born. This will allow her to be immersed in the laboratory and research field and directly help Drake and NKH.
“I remember when I first heard God calling me for this step,” said Tarah. “I remember talking to God and saying, ‘God, I am a 32-year-old stay-at-home mother of four children. People are going to think we’ve lost our minds!” But, Tarah promised God that she would submit her application in obedience and step out on faith.
This could be just another story about a child with a rare disease and a family wanting to find a cure. But it’s more than that. The first part of the Drake Rayden Foundation’s mission statement is, “to bring hope through the gospel.” Eric and Tarah speak openly and humbly about God’s working through this little boy’s life, and it can’t help but spill over into the lives of their children.
Birkley (8), Harper-Kate (6) and Rayph (4) love to read to their little brother and cuddle with him. They have worried over Drake’s hospitalizations and they know that he could pass any day. Eric said, “This is what we tell them. God has given us this day with Drake, and we’ll make the most of it. When we worry, let’s focus on thanking God for the days we’ve had and pray for him to get better.”
Eric also said that this experience makes for a better spiritual foundation for their children. “We tell them that God loved us enough to send His Son, so why would He not be with us? What kind of heart is He building in them to go through this?”
“I think Drake is the most tragically beautiful thing I have ever experienced,” said Tarah. “All I ever felt called to be was a wife and mother, and I used to say I could live through anything as long as it didn’t involve my children. God has shown us that even when the entire bottom falls out from under you that then, and only then, do you realize that He is enough, and always has been.”
The family uses that motto on the foundation t-shirts, wrist bands and Facebook updates for Drake’s prayer warriors. #HeisHenough is something that reminds them daily that no matter what Drake’s future holds, God is always enough.
If you would like to follow Drake’s journey, you can follow them through their Facebook page at the Drake Rayden Foundation or their website DrakeRaydenFoundation.com.