Cognitive Age: 24
Therapies: None at this time
Schooling: Tiffany attended mainstream school with adapted weekly P.E., from grades 6-12, she was in a combination of mainstream and special needs classrooms.
Siblings: Jennifer (38), Daniel (26)
Parent: Corine Florez-Patyten
Kabuki Symptoms: Premature thelarche, full precocious puberty, large floppy ears, Horseshoe kidney, breast development before 15 months, elevated estriol levels, learning handicaps, raveled helix, short columella, poor hand eye coordination, brittle bone syndrome
Tiffany’s Story: Tiffany is very high-functioning, and many people don’t realize that she has Kabuki syndrome. She functions as a pretty typical 24 year old woman, with only a few physical delays.
Because of her seeming so normal, Corine thought her baby was perfectly normal when she was born. The birth was traumatic. Corine had been involved in a car accident at 8 months pregnant. Contractions started and stopped on their own, but Tiffany escaped from the birth canal and ended up stuck on a pelvic bone. Luckily, there were no immediate complications after Tiffany graced the world with her presence. Corine thought she was perfect, seemingly average, but doctors disagreed. After a year of enduring doctors telling her various things were “wrong” with Tiffany, Corine saw the delays. That first year was very trying, as Corine became angrier with the doctors for pointing things out. After all, in her eyes, Tiffany was perfect.
Once some of her delays were recognized, a treatment plan was made. Tiffany ended up still going to mainstream school, only utilizing some adaptive techniques for physical education, until middle school when she began to split time between the mainstream rooms and special needs classes.
Math was one of those subject that Tiffany struggled with the most. During her junior year of high school a guidance counselor recommended that Tiffany accept a certificate of completion after being unable to pass state mandated testing. That would mean that Tiffany could not get her diploma, though, and she was having no part of that. She wanted her diploma, she had worked so hard to get where she was. Instead of accepting that certificate, Tiffany took on 4 math classes. She studied, she worked hard, she had a fabulous math teacher and other teachers who believed in her. And in 2010, Tiffany graduated high school with her diploma.
After high school, Tiffany wasn’t done. She went straight to a culinary school, completely on her own, after being inspired by a home economics class. Her culinary instructors were incredibly supportive from the beginning. They guided Tiffany in the right direction, but let her successes come organically. She graduated in 2013 with Dean’s Honors, and her aspiration is to one day own a bakery where she employs special needs adults and helps provide them with independence.
Today, Tiffany battles some internal health issues. She’s suffering bouts of tachycardia, has celiac disease, thyroid problems and an iron deficiency. All of these lead to her being chronically tired, but despite this, she still manages to make and sell Sweet T blankets, which she does by hand and uses only the best material. She will take orders, too, if there is a specific pattern you like!
Tiffany’s Favorites: “Tiffany loves her family, animals, baking and all things Disney. She makes fleece tie blankets to maintain her hand eye coordination and has donated to many KS fundraisers. She dreams of opening her own bakery someday, so she can give work experience to special needs adults.”
Tiffany’s Relationship With Her Siblings: “Jennifer and Tiffany have a large age gap. They love each other but both have strong independent personalities. Tiffany and Daniel get along when they want to, they are both strongly voiced and disagree often. Daniel will always go beyond to look out for his little sister.”
Advice for Kabuki families: “Stay positive and mark every small milestone. We as parents take them for granted. Always advocate! We went so long knowing so little about Kabuki, we pick up every piece of information and share wherever we go.”
Advice for parents of “typical” children: “Many see Tiffany as a "typical" adult. It couldn't be further from the truth, though, she still has medical issues, physical abnormalities and all the things involved with Kabuki since birth. We have always made peers aware of Tiffany having KS, so they knew that she was "different." This wasn’t to set her apart, but to be aware that she couldn't keep up as a typical child and why she was different. Tiffany doesn't define as having Kabuki Syndrome, she defines as Kabuki Syndrome being a part of her because without it, we wouldn't be where we are now with the love and support we receive from all KS families around the world.”
How Tiffany has impacted the family: “Tiffany has changed our lives for the better. Due to complications after the birth of her brother, Tiffany was an afterthought, but she is loved regardless. She has taught me to embrace the good and take the bad times as they come. We roll with the punches! While some medical conditions may not be fun, Tiffany smiles through it all.”
Tiffany, like Jordan and so many other Kabuki adults, is a true inspiration. She has fought so hard to get where she is, and she continues to fight every day. But she’s always got that beautiful smile on her face, one that’s so contagious that even a photo of her forces you to smile back. She exudes happiness and joy, and even if she’s having a rough day, she finds something positive to latch on to.
Corine and Tiffany are lucky to have a supportive family, because until 2014, they had not yet heard of another Kabuki family. It was Tiffany searching Facebook that landed her in the Kabuki syndrome group. If you aren’t in the group, you should be. Corine says they received an outpouring of love and welcome from everyone when they joined, and I think most of us have similar experiences.
Tiffany is a special kind of girl, with a huge heart, a willingness to learn and the desire to do nothing but help others. I think we can all take a page out of her book!
***Editor’s note: While I have not had the pleasure of meeting Tiffany in person, we have had several interactions on Facebook. I plan to purchase one of her Sweet T blankets after hearing how amazing, soft and warm they are! Be sure to give her page a look, you won’t be sorry!