WSVN — Alzheimer’s disease robs adults of their memory and eventually their lives. But imagine if it was happening to your child. One Florida family is sharing their experience to educate others. 7’s Robbin Simmons takes us on “Julia’s Journey.”
When you first meet Julia Kain, she seems like a typical teenage girl.
She likes country music…
Julia Kain: “Luke Bryan, not Justin Bieber.”
And the color pink! But this 16-year-old’s life is anything but typical. Her parents noticed something was off when she was about 3 years old.
Tonya Kain, Julia’s mom: “She was clumsy. She was always running into stuff, knocking stuff over.”
As she got older, teaching her basic tasks became very frustrating.
Jason Kain, Julia’s dad: “Teaching her time on a clock and coins, you could sit there for hours and go over the same thing and stop for 30 seconds and go back to it, and you’re starting all over again.”
Julia Kain: “Things my parents tell me to remember, sometimes I don’t remember the things they tell me.”
Doing homework could take up to six hours a night.
Tonya Kain: “You would go through a page of math homework and when you were done, it was like she had never seen it before.”
Her mom took her to the doctor, but she kept being told that nothing was wrong.
Tonya Kain: “It was easy to look at her and think we’re just overreacting.”
But something was going on with their daughter, and no one had any answers. Then, after years of going from doctor to doctor, they learned the devastating truth.
Tonya Kain: “You never would have dreamt that it would be as severe a diagnosis as it is.”
Julia has Niemann-Pick disease, Type C, a rare genetic disease also referred to as children’s Alzheimer’s.
Tonya Kain: “And I prayed. I prayed that it wasn’t that.”
Jason Kain: “Five hundred cases in the world. I mean, that’s just — how do you process that?”
Julia would slowly lose her memory. The disease would affect her speech, her hearing and her ability to walk.
Jason Kain: “As you learn more and more about it, you realize how bad it is.”
The family is hoping for a miracle, because most people with this disease don’t live past their 20s.
Julia Kain: “It’s incurable, and right now, I’m going tonight to see if my doctors can find a cure for this disease.”
Every month, Julia and her mom fly from Ocala to Maryland, where she’s given an experimental drug to try and slow down the symptoms.
Julia goes through the painful process each time with a smile on her face.
Jason Kain: “I’m like, ‘How can I have a bad day?’ Step in her shoes. You won’t have a bad day.”
Julia wakes up excited for what each day brings. She’s doing well in school.
Julia Kain: “Last progress report, I got all A’s with one B.”
She works hard in physical therapy every week.
Julia Kain: “It’s helping my arms and legs.”
And like most teens, she’s looking forward to summer vacation.
Julia Kain: “I know I’m going fishing, for sure.”
Julia’s parents will never give up fighting for a cure, but until then, they plan to make the most of each day in Julia’s journey.
Jason Kain: “For me, she’s truly a blessing. And I say this because, putting her to bed and waking her up every day, it don’t get no better than that.”
Julia’s mom says, since starting the study almost three years ago, she’s seen a slight improvement in her daughter’s memory. Julia’s medication costs more than $56,000 a month. Right now, insurance covers most of it.
For more information on Julia and Niemann-Pick disease, check out the links below.
FOR MORE INFORMATION:
National Niemann-Pick Disease Foundation:
www.nnpdf.org
Julia’s Journey:
www.juliasjourney.net
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