A Beautiful Life: The Connor Dotson Story

The Connor Dotson Story

To know Connor Dotson is to love him.

Connor is a well-known figure in the community. From sporting events to the dance floor, it is hard for Connor to walk into a room where he isn’t immediately met with a “Hey Connor!” and lots of hugs. His contagious smile, his immense joy and his love for life are just a few of the things people think of when they think of Connor.

On August 11, 1999, Kacey Bolton and Jamie Dotson were overjoyed with the birth of their son, Connor. It wasn’t until Connor was born that his parents noticed his physical features were different from a lot of the other babies in the nursery, which sparked testing and lots of doctors’ appointments for Connor over the years.

For many years, doctors were unsure of Connor’s medical diagnosis. Aside from the physical features, Connor experienced developmental delays and suffered from seizures beginning at 15 months old. He continued going to occupational, physical and speech therapies throughout his life.

Just before Connor’s 10th birthday, Kacey received a call from a doctor with the University of Kentucky Pediatric Genetics Clinic who said he finally had an official diagnosis for Connor, Nicolaides-Baraitser Syndrome—or the ‘Beautiful Syndrome’ as it is called by Connor’s family and friends.

Nicolaides-Baraitser Syndrome, also known as NCBRS, is an extremely rare condition that is characterized by intellectual disability and various physical features. Some of its symptoms include sparse hair, distinctive physical features, seizures, short stature and impaired language development.

At the time of his diagnosis, Connor was one of 23 cases in the world. Today, he is one of less than 300 cases worldwide. While his diagnosis of NCBRS changed nothing for Connor or his family, Kacey said that it has connected their family with a community of others with the same diagnosis, giving them the opportunity to travel around the world to meet others with the syndrome.

Because of his special needs, Connor must have constant care and Kacey said they couldn’t make it without their caregiver, Kathy Jones, who also watches Kacey’s stepson, Trent, who has autism. Kacey said that Kathy and Connor’s bond is so special and is very thankful for her helpfulness and love for Connor.

Connor enjoys going to sporting events, particularly basketball and football. He loves music and dancing, as well as going to church and rewatching old sermons on his iPad. He loves sweet treats, especially late at night when Kacey said he is supposed to be sleeping.

Connor also has a love for horses and will be resuming horse riding lessons this summer. He loves watching horse races and his family hopes to one day take him to see the Kentucky Derby in person.

Connor was recently invited for a private horse farm tour at Gainesway Farm where he had the chance to meet Tapit, a retired Kentucky Derby racehorse.

Every year, Connor loves participating in London’s annual Action for Autism Walk with Trent. Connor loves breaking it down on the dance floor at Special Prom, which is hosted by Action for Autism. And he enjoys supporting all his siblings in their sporting and other events in their lives, just as they have supported him.

Kacey said there is not one thing she would change about her son, as he is such a blessing to all of those around him.

“He is so joyful, so inspiring,” she said. “We spoil him, and he brings so much happiness to us and to his siblings.”

Even growing up, Connor has always been the happiest person in the room and is usually the cause for everyone else’s smiles and joy, as Connor doesn’t meet a stranger and can turn anyone’s bad day around.

“He just has such a love for life,” Kacey said. “The little things make him happy.”

Connor, who is now 24 years old, is facing another diagnosis.

It was 10 years ago when doctors unexpectedly discovered a small tumor on Connor’s left lung. Since then, doctors have continued to monitor the tumor for growth or change. It wasn’t until last fall that doctors began to worry as the tumor had grown significantly and suggested that Connor have a biopsy done to determine if it was cancerous.

Earlier this year, Connor had a biopsy of the tumor in his left lung, which was found to be cancerous, and his family has been faced with the difficult decision of what to do next. After much discussion with doctors, it was found that the best option to give Connor the best chance at living a long, happy life would be to completely remove his left lung. So, Connor will be having a pneumonectomy in the fall.

Connor will have a week of recovery in the ICU following surgery which comes with its own challenges as Connor struggles to even keep something as small as a Band-Aid on because of his special needs, let alone having tubes and IVs all over his body.

The news of Connor’s cancer diagnosis has been heartbreaking for his entire family, as well as the community who has come to know and love him, but Kacey said they know their faith in God will get through them.

“If it is God’s will to heal him, that is what we are praying for,” Kacey said. “But we have all the faith in the world that even if we have to go through surgery, the good Lord is going to take care of him.

“We know Connor loves God and God loves him and he will see him through whatever obstacles he faces. We are fully trusting the Lord in every decision we make. And we know God is glorified through Connor.”

Kacey said the community’s support since Connor’s cancer diagnosis has been incredible, with special nights of worship and prayer in Connor’s honor and making T-shirts in support.

“I think you can get through something like this knowing you have God on your side and the support of your community, your friends and family,” Kacey said.Kacey said if there is one positive thing that can be said of Connor’s cancer diagnosis it is that he doesn’t understand that he is sick.

His family has made the decision to continue to live life like normal, including planning an exciting summer for Connor with weddings for two of his brothers, a vacation, plans to visit the lake and all the things Connor loves.

“Him not realizing that he is sick is just a huge blessing because he doesn’t have to worry about things,” Kacey said. “If we could all live life like Connor, we would all be better off.”