One August morning in 1992, I noticed Brittni did not want to stand or hold her bottle. I’d put the bottle in her right hand and she’d transfer it to her left.
Some time later, I noticed that when she’d lean against the bed, she’d tap her toes, as though she didn’t want to put any weight on her right foot.
It was when I noticed that Brittni’s right leg would stick straight out when I took her for rides in her stroller, that I finally pointed my observations out to my mom who said to go right over to the hospital and have Brittni checked out.
That same night, after hours upon hours of tests, the ER doctor told me Brittni had suffered hemiparesis. She had had a stroke.
It was explained that Brittni’s stroke did not happen all at once. It was gradual.
Within a month, the stroke managed to also knock out the left side of Brittni’s body.
The diagnosis was Leigh's Syndrome, a rare disorder that affects the central nervous system and is caused by mutations in mitochondrial DNA that interfere with cells in the brain that play a role in motor movements.
My daughter was only 1 1/2 years old at the time. She had just learned how to walk and start saying words.
All that was gone.
I knew then that for the rest of Brittni’s life, I would have had to take care of her every need as though she were still a baby. She would be completely dependant on me.
Life changes—well, that’s easily said...
When Brittni was two years old, I enrolled her in special education. Most families send their kids to school with back packs. I send Brittni to school everyday in a wheelchair. Back pack in tow.
It was when Brittni was about seven years old that I met my husband Carl. Over the past 12 years, he has become one of her biggest supporters, learning to understand how she feels and what she wants to do. He’s also been a big help in pushing and lifting that wheelchair three to four times a day!
Brittni's strength and her desire to attend school have kept me going. I can tell you that it has not always been easy, and at that at times I have cried. During one of these moments, Brittni tried to comfort me by rubbing my back while we sat next to each other, watching TV.
Although we are a family with a child who has disabilities, there is nothing that stops us from going out and having fun. One year, Brittni traveled with my daughter Sachi and me to New York. Honestly, however, I can say that our fun was taken to a whole new level when my family became a Starlight family in January 2000.
I first thought of Starlight when Brittni was unable to speak for herself, but it was when she finally began to form phrases that I picked up the phone.
My entire family—Carl, myself, Sachi, Brittni and stepsisters Jazell and Janell—have had many outings to amusement parks, county fairs, baseball games, bowling alleys—all thanks to Starlight.
At Great Escape events, we are always greeted by the best staff and volunteers—so polite and attentive and respectful of our special needs. The StarPower Ambassadors always bring so much energy to an event, and I love that so many of the Ambassadors are the same age as my own kids. When Brittni gets invited to a Great Escape, she wonders what Ambassadors will be there. Around our house we joke, “What Ambassador hasn’t Brittni met?!” She knows all of them.
Starlight has done so much for my family that I always make sure to give back. Whenever we’re at a Great Escape event and I notice people looking at us or wondering who we are, I always take it upon myself to walk right over and share how great Starlight is and invite them to get in touch. And this is what makes me feel so good—giving back to Starlight. For all the lives they have touched. And will touch!
Kathy, Starlight Mom