SAN ANTONIO – A San Antonio teen who suffers from a rare disorder is celebrating her 16th birthday with the community in a parade fit for a queen.
Kylie Kurtz turns 16 on Nov. 8, but plans to celebrate this Saturday with a parade around her neighborhood surrounded by people she loves.
Kylie’s mother, Shelley Kurtz, said Kylie was diagnosed with Trisomy 9 Mosaic Syndrome when her daughter was just a baby.
“It is when the No. 9 chromosome triples instead of doubles, affecting multiple cells in the body,” Shelley said. “It impacts people differently. There are some children I know who can walk and talk but still have the disorder.”
Kylie was born through a C-section in 2004, Shelley said.
“We did not know her diagnosis before she was born,” Shelley said. “I didn’t know anything. They threw her over my shoulder like they would normally do and something immediately told me something was wrong.”
Shelley said that those concerns continued when the family got home.
“When we got home, she was never opening her eyes,” Shelley said. “Not even just a little bit. We would sometimes have to open her eyes to play peek-a-boo because we didn’t even know what her eyes looked like.”
Shelley said she took Kylie to the emergency room and doctors turned her away.
“She started choking when she would try to eat,” Shelley said. “She would have these different episodes and I would take her back. They would tell me that nothing was wrong with her and that I needed to learn how to be a first-time mom.”
However, Shelley said she did not give up and continued to search for answers for her daughter’s condition.
“They finally told me that if I really thought something was wrong that I should take her to this particular eye doctor,” Shelley said. “We went there, and this doctor happened to be a cranial malformation specialist, and he notices there were some deformities with her face and skull.”
That doctor sent her to another specialist who performed blood work on Kylie and tested her chromosomes.
“The office called and said, ‘Come in for the results and bring someone who can drive the car,’ so I knew something wrong was found,” Shelley said. “They let us know it was trisomy 9 mosaic syndrome. Not all children have the same symptoms. There are some with different cells affected.”
To Shelley’s dismay, the doctors couldn’t tell her much about the disorder.
“He told us that the information they had on it was outdated from 10 years prior and that not enough studies had been done on it,” Shelley said. “He did tell us that only 75 cases were ever known worldwide to date and he said that she would not live past four months old and that those four months would be really hard and difficult for us.”
Shelley agreed and said the next four months, and the following years, were difficult for her and her family.
“I thought every moment and every second was the last,” Shelley said. “I thought, ‘This is it. This has got to be it.’ So it went on like that every day in just agony.”
Kylie began experiencing seizures, Shelley said. Eventually, Kylie had to be placed on a feeding tube.
Unable to walk or talk, Kylie required around-the-clock care. Shelley said every second was worth it.
“When I took her to the hospital because she kept turning cold blue and stopped breathing, that is when a nurse sat me down and told me how to fight for my daughter,” Shelley said. “I have since fought to be her voice. Children like her go unnoticed because they don’t have a voice. I am her voice, and according to people who know me very well, I do a pretty good job using it.”
Overcoming every obstacle in their way, Kylie defeated all the odds, all with a smile on her face.
“She is the absolute light of our life,” Shelley said. “She has taught us so many things -- compassion for others, not to judge people, to love and hold value in your family, to never take anything for granted.”
Shelley said Kylie has mastered milestones that may seem simple to other parents.
“Her only goal with therapy was that she could play with a toy,” Shelley said through tears. “That is all I wanted her to do, and by the time she was 4 or 5, she finally learned how to play with the toys, and it melted our hearts. It is the little things that we try to hold on to.”
Shelley said Kylie loves people, Christmas and living life to the fullest.
“Nothing gets this child down,” Shelley said. “We could have the worst day ever and walk inside and see this smile or that hand go with that toy and it fixes everything.”
In 2015, Shelley was diagnosed with cervical cancer and is unable to have any more children. Despite the news, she said Kylie is all she needed.
“She is enough,” Shelley said through happy tears. “You don’t need those extra things, like different activities she will not be able to do or anything like that. You don’t need that to be happy or to love her. You just got to learn how she loves and give that back to her.”
Shelley has also joined different social groups online with a small number of families with a loved one diagnosed with Kylie’s disorder.
“To be there to help families who have questions, or to learn a kid just turned 30 years old, gives me so much positive hope,” Shelley said. “In our group of kids like Kylie, there are at least over 150 children that we now know of at least worldwide that have this syndrome, and I am sure there are many more that we don’t know of. It has brought me a lot of comfort to know that there are other children like yours with different severities. Yours may not be the worst or the best, but it gives you that sense of knowing you are not alone.”
On Saturday, Shelley is planning a parade in which Kylie will sit in her favorite pickup truck and watch as people drive by showing their love and support.
“I would like her to see the return of love from people,” Kurtz said. “Anybody who is able to come out, please come wave to her and say, ‘Happy Sweet Sixteen!’ Even with all of the craziness that is going on, there are people with good hearts and who love just as strong as she does, and I want her to feel that even if she is here for just one more day.”
The parade will be held at the following address:
7333 Potranco Road, Apartment 8101
San Antonio Texas, 78251
Drivers are to meet at the front office at 11:50 a.m., where Kylie’s father will coordinate the route of the parade.
The family says if you cannot make the celebration, you can mail in a textured birthday card, which is Kylie’s favorite thing.
“She can feel love,” Shelley said. “She can feel hurt. So I ask people be kind to children like this, because they can feel that and they want someone to love them as much as they love you.”
