Rare Rockstar Tira’s Story

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By Catara C.

Tira is a rockstar; she is constantly bringing so much joy and light to everyone surrounding us. To her, she’s no different than anyone else and treats every day like a golden one. She is also independent. She has her struggles with Borjeson Forssman Lehmann sydrome (BFLS) but does not let them get in her way. Communication and physical challenges might be a struggle for her, but you would never know it, as she has a constant smile on her face. Out in public, we get stopped by people saying, “We see Tira at school and my daughter knows her and she’s so friendly,” like she’s the Mayor of town. 

She goes to a different school than her sisters and is in a special needs room consisting of an aide, physical therapy, vision, speech, and other types of assistance. She is in a typical second grade classroom for portions of the day, but she is developmentally behind. She tries to keep up with others physically and verbally and is working through vocabulary and learning to communicate. It’s easy to get frustrated when someone does not understand what she says or does. Tira gets more tired than some and experiences seizures due to being exhausted or overstimulated. She is allowed breaks throughout the day to grab an extra snack if needed. School alters the day for her depending on mood. She is also very active, involved in field hockey and a big fan of soccer games. When she comes home, she adores and loves her sisters, and loves to help out around the house with the dog. She thinks her sisters are celebrities in her world, when really, she’s the celebrity. 

I will never ever forget bringing her home as a baby from hospital. We felt something was off. We thought it could be torticollis because of her head position. We got a helmet, but her eyes did not stop bouncing.  She ended up having two eye surgeries which worked tremendously. Tira could not go on her belly and lift her head up until she was one, and physical therapy started coming to the house. Milestones were not being reached and we kept bringing in services and visiting doctors, but we didn’t want Tira to be a science experiment. The first year was a struggle until we found out about her genetic disorder. We went for tests early on, but everything came out normal. Tests change so often that another new and different test could help in a year. One test took samples of ours and Tira’s blood, and a genetic disorder was found. We got a phone call and were slightly relieved to have an answer, but it is still something you are not prepared for.  

We are still learning what Tira is succeeding in and what she needs help with. She is an amazing, strong-willed individual, the strongest in our household. Every chapter, every phase of life is possibly a challenge that no one can prepare you for. With Tira’s BFLS diagnosis, she has a developmental delay, but it has not stopped her from moving forward in life and living every day to the fullest. We don’t know her future, but we pray it won’t go backwards. She might not achieve the same things that other kids achieve, like driving or going to college alone, but she will make the most of every day no matter the struggle or obstacle. 

We first heard of NORD as my husband kept reaching out and searching for answers and resources to try to support us and Tira. He came across NORD and started to investigate; life would get busy, but he would tap in to see how to get involved. We wanted to get involved in some shape or form and raise awareness as Tira started to make friends; we wanted to put our story out there to educate others. Tira’s therapist was also involved in NORD and ran a marathon. We have an incredible support system, but to be connected with families who live with the same day-to-day circumstances in their own homes, people who understand what your morning is like, is meaningful. 

Our family recently fundraised with an event to support NORD. We are not sure how much Tira comprehended what it means to bring awareness. She knew that people were there to support her, and she felt like a movie star. Her sisters are her biggest fans, and to see them so involved with NORD and our event in matching T-shirts, I had a proud parent moment. 

It means the world to see so much support for us and for NORD from people who know our story inside and out, to those who don’t even know us or know our story at all. I am so proud of Tira and I don’t want to stop here. I want to keep bringing awareness to not only Tira, but all children and individuals with all rare diseases and help them through any struggles they have.