Carson Snow stalls the small group gathered in her room at Cook Children’s. They want to hear her sing a Taylor Swift song.
“I don’t remember it,” she says.
Maybe, if she could hear the beginning of the song that would help her. Quickly, the video for the song is pulled up on YouTube.
Quietly and shyly, a lovely singing voice begins almost with a whisper. She chooses a song that’s surprisingly fitting, not because she identifies with the breakup of a young couple. But because of the true heartbreak that has been weaved in and out of Carson’s young life.
“I’m so glad you made time to see me.
How’s life? Tell me how’s your family?
I haven’t seen them in a while.
You’ve been good, busier than ever,
We small talk, work and the weather,
Your guard is up and I know why.
Because the last time you saw me
Is still burned in the back of your mind.
You gave me roses and I left them there to die.”
Carson wears a “Red” rubber bracelet on her wrist. She looks forward to leaving Cook Children’s soon so she can show her classmates what’s been given to her special from one the biggest pop stars in the world, along with an autographed picture, guitar picks, stickers and a T-shirt she wears quite often to school. Her grandparents say the is the envy of everyone at South Grand Prairie High School 9th Grade Center.
For a child who has one of the most unique diseases in the world and has lost both her parents to cancer, Carson’s love for Taylor Swift is refreshingly common.
What’s not so common is why Carson is receiving this care package. Carson has a disease that less than a 1,000 people in the world have been affected by, called Alström syndrome. Carson had thought about meeting Taylor as part of the Make-A-Wish program, but was a little shy to meet her musical hero.
A counselor at Camp Reynal, a summer camp for children with kidney disease, knew about Carson’s love for Swift and managed to contact someone on her team.
“Carson has been a blast to work with,” said Robert Gillespie, M.D., MPH, a nephrologist at Cook Children’s. “ One of my favorite memories of camp is Carson portraying Taylor Swift in the camp movie. She has had so many difficulties but she is very determined and she just keeps on going!”
On a recent visit to Dr. Gillepsie, Cook Children’s staff presented Carson with the care package.
It was a happy day for a young girl that has seen her fair share of tragedy lately.
Carson was born blind. Her family thought that was her only issue until she started school. A hearing test was performed on her when she was 5 years old and it was discovered Carson had a hearing problem. It was unusual though because her hearing loss was atypical. It was more mid-range frequencies, which are the voice frequencies. So Carson did not seem to have trouble hearing from far away, but she had issues close-up.
“We couldn’t believe that because she could hear us whisper across the room,” Jim Ziegler, Carson’s grandfather said.
In the sixth grade, Carson’s blood sugar would peak at a high level and her stomach hurt.
Once, Carson’s blood sugar was so high she was rushed to Cook Children’s Emergency Department. They found she had Type 2 diabetes. As tests continued, other issues were discovered – low kidney function, heart issues, liver problems and scoliosis.
Dr. Gillespie researched Carson’s problems and discovered she was battling an extremely rare genetic disorder, known as Alström syndrome.
“It usually goes undiagnosed most of the time because you treat the first symptom you see,” Ziegler said. “We were really lucky that Dr. G diagnosed it that early, even though her kidneys were pretty much gone at that point.”
“Carson has been a blast to work with,” Dr. Gillespie said. “ One of my favorite memories of camp is Carson portraying Taylor Swift in the camp movie. She has had so many difficulties but she is very determined and she just keeps on going!”
Physicians at Cook Children’s managed Carson’s medications and insulin. She had no serious heart issues and fortunately that continues to this day. Her kidneys were another issue. She needed a transplant.
While the family dealt with a disorder that very few people in the world have even heard of, they were soon stricken by a much more common, yet tragic, disease. In the course of 15 months, Carson lost both of her parents, Chris and Trisha Snow, to cancer. They were childhood sweethearts, athletic and seemingly in perfectly good health. Then, in an incredibly short time period, they died. Chris was 39 and Trisha, 41.
With her father now deceased and her mother barely clinging to life, Jim and his wife, Darla, were embracing more and more responsibility. They were dealing with the death of their son-in-law, the impending loss of their daughter and were now the primary caregivers of their three grandchildren - Carson, Savannah and Ryder Snow
Even prior to Trisha and Chris getting ill, Darla Ziegler had volunteered to be the kidney donor. Trisha said no and that she wanted to be tested first. But once the parents were battling cancer, Darla readily stepped in to donate.
The family’s pastor was with most of the family members at Cook Children’s and Trisha, who at this point was in the hospital in Arlingon, was given constant updates by her younger brother, Bryan, and his wife, Crystal, who were relaying phone updates the day of the transplant. The transplant worked beautifully. Carson’s numbers have been great. Soon after, Trisha died, knowing that now all three of her children were taken care of and doing well.
Darla says the day of the transplant is one she will never forget. After all, it occurred on Dec. 5, which happened to be the birthday of Savannah, Carson’s older sister. It’s also the month that Taylor Swift sings about in Carson’s favorite song.
“But this is me swallowing my pride
Standing in front of you saying, I’m sorry for that night.’
And I go back to December…
It turns out freedom ain’t nothing but missing you,
Wishing I’d realized what I had when you were mine.”
Carson finishes singing and everyone in her room at Cook Children’s claps. She is there for a follow-up visit and things are going very well. But after the song has ended, there’s not a dry eye in the room. Mainly, it’s because of the incredibly sweet performance by Carson. But it’s also something more. It’s a sense of thanks. Thanks to the doctors at Cook Children’s for helping Carson, to the fact that they have survived a horrific couple of years and that arguably the biggest pop star in the world right now sent a care package that meant so much to a 15-year-old girl.
“I can’t imagine it,” Darla said. “I can’t believe just by someone making some phone calls or emails that somebody would be so sweet to somebody she doesn’t even know. It’s very rewarding for someone that young would care about a child that has special needs.”
“I’d go back to December, turn around and make it all right.
I’d go back to December, turn around and change my own mind
I go back to December all the time.
All the time.”