It’s easy in a small town to think that you know everyone and his story, isn’t it? Of course, the truth of the matter is that seldom do we really understand the depth of what others cope with every single day of their lives, nor do we understand the role that stress plays when people go home at night and shut their doors.
That is certainly the case for me when it comes to Arnold and China Cuellar (people I have known most of their lives) and their son, Cameron, a sophomore at Comanche High School.
In 1999, China and Arnold were expecting a new baby to be delivered in their home. Obviously, they were excited about that, with no reason to expect anything out of the ordinary with this pregnancy. And then China contracted, of all things, chicken pox.
“I was at twenty-six weeks when I broke out. I had a horrible case of chicken pox, both inside and out, badly enough that I was quarantined in the hospital and at one point, sick enough for them to consider putting me on a ventilator.”
Finally, she recovered, went home, and contracted the shingles!
After her water broke at thirty weeks, China was hospitalized until on May 23, 1999, Cameron Cuellar decided that he was tired of waiting; he was only thirty-two weeks old when doctors performed an emergency C-section, thankfully, he was set to be a very big boy, and he came into the world already weighing 4.8 pounds!
At that point, China and Arnold had no idea that their baby boy had been born with a birth defect due to China’s illness. They did, however, soon realize that he was developmentally delayed, but that is often due to being a preemie as my family well knows.
“Things like holding him up and expecting him to bounce on his little legs as babies do, did not happen. He couldn’t sit up, couldn’t crawl, couldn’t pull up, and he had problems swallowing.”
The Cuellars rocked along like this for the next fourteen months, knowing that things were not right, but wanting to believe doctors who blamed the problems on Cameron’s preemie status.
“I knew something was wrong, but they kept telling me that he would catch up, that he was just a preemie.”
Then, at fourteen months, Arnold and China took their baby to Cook Children’s Hospital in Fort Worth where they got the diagnosis: Cerebral Palsy…CP…Spastic Diplegia, to be exact. There’s no way around it; the parents were beyond scared.
“I was terrified because I didn’t know anything about CP. It wasn’t like it is today with research being easy via the Internet, and no one really told us much at that point. Cook contacted our pediatrician and got us into a program called Early Childhood Intervention so that therapists could come to our house to give Cameron both physical therapy and occupational therapy.”
Even with the added therapy, the results were not fast. In fact, Cameron did not start walking until he was bout 3 ½ and then it was with a walker. The only thing about him that was not delayed was his cognitive development.
“He was talking in full sentences by the time he was nine months old. His speech certainly was not delayed!” his very proud mom laughed.
Obviously, having a child with CP doesn’t just change your life, it completely redirects it. China stayed home with Cameron until he started kindergarten because there was so much to do, so much her little boy needed.
“We still had to do therapy on him as well. He just needed a lot of care. Plus, I had to be sure that no one babied him. When you have a child with CP, you have to be sure that he is allowed to become all that he can be. It took a lot of time, but if I had not pushed him, he would have sat back and let others wait on him. I was determined that he would be self-sufficient. I wanted him to understand that even if he had to struggle to get there, he could reach his goals. I know I seemed mean to the outside, but I had to show him that he has to push through to overcome, and so I pushed.”
And then three years ago, China and Arnold received the first hope that they had been given since Cameron was fourteen months old.
“We were at my dad’s house, and the television was on NBC. Suddenly, there was Brian Williams doing an interview with a Dr. Park at the St. Louis Children’s Hospital. There was a surgery, not even FDA approved yet, called Selective Dorsal Rhizotomy, and it sounded as though Cameron was a candidate for it.”
In layman’s terms, this is a surgery where doctors go in through the spine and hook electrodes to each nerve until they find the nerves that tell the brain to keep the muscles tight all of the time, which is what causes Spastic Diplegia. Then, doctors sever those nerves (4 of them) and laser them so they cannot grow back together. This releases the muscles so that they can begin to work.
“Of course I already knew that Cameron’s form of CP was Spastic Diplegia, and that he was partially paralyzed due to the tight muscles. This surgery sounded perfect for him! I called St Louis Children’s Hospital and we got on the waiting list.
“Then, in December of 2013, we had met our insurance deductable, and I called again and explained our situation, but there were no openings. (The surgery is not as effective if you have it after the age of eighteen so we knew we had to get it done soon.)”
Believe it or not, the nurse called China back that very afternoon to tell her that Dr. Park had opened a special surgery date for Cameron if he could get there in time.
“We had to have all medical records to them within two days, and we were in the car heading that way on December 11. We arrived on the twelfth, and Cameron had surgery on December 13, 2013! We were there for two weeks.”
Things couldn’t have gone better, according to the doctor. And with over 2,500 of these surgeries under his belt and with a 100% success rate, I’m thinking that he should know. However, China does admit that it has not all been roses, and she did have to fight being discouraged after the surgery.
“It was still a struggle even after the surgery, and people considering the surgery need to know that there are no immediate miracles. Cameron’s muscles had been too tight since birth. When they were released, they were very loose and very weak. I got discouraged after the third or fourth week because I couldn’t see any improvement. By week six, I was excited again, and Dr. Park just kept reassuring me, and he was right. I should not have been second guessing him. Thankfully, I was wrong, and I would do it all over again in a heartbeat.”
Then, in March Cameron was back in St. Louis for a surgery to have his hamstrings lengthened because CP kids don’t have muscles that grow along with the bones. The doctor also feathered the Achilles tendon at this time. Cameron was in a cast for three weeks and then back in braces until June of this year.
Of course, it’s been a physical struggle and a lot of physical therapy from Monday through Thursday of each week as Cameron relearns how to walk again.
“It is amazing to see him go from walking on tip toes to flat feet and shifting his hips correctly. He has come so, so far!”
Cameron will finish physical therapy in December of this year. Doctors can’t promise that he will be playing sports by this season, but by his senior year the only thing he won’t be playing is football, according to Dr. Park.
“When he was a baby, they told me that he would never walk, probably not talk, always be in a wheel chair, and I just said NO. He was smart, and I didn’t baby him. We were determined that he would work to overcome this. And here we are. Soon he will be playing sports just like his brothers.
“Cameron has always wanted to run cross country and track. He may not be the all-star, but in our book he will be. I used to cry and beg for a way to fix him. I feel like it might have taken a while, but that prayer has been fulfilled. Cameron has so many dreams, and now he has a chance to fulfill those dreams.”
And it all started with Brian Williams, NBC, and an interview with the right doctor!
Today, China wants to begin to raise funds for families just like theirs, families who might have insurance that will cover the surgery but need help with transportation, meals, hotels, and everything else that is cost prohibitive. If you’d like more information from China, please feel free to email her at firstname.lastname@example.org.