PASCO COUNTY, Fla. (WFLA) — For parents with children with Tay Sachs disease, there’s often little hope, no treatment, and no cure.

It’s a rare and deadly disease that attacks the nerve cells in the brain and spinal cord.

Thanks for signing up!

Watch for us in your inbox.

Subscribe Now

8 on Your Side

Life took a turn for the Halim family of Pasco County when Lily was diagnosed with Tay Sachs disease. Lily’s mom, Yasmina Halim, said children with rare diseases are often overlooked and don’t receive funding as other medical issues do.

Lily is non-verbal, so she finds other ways to communicate: through her eyes, giving a thumbs up and her tight hugs!

“My little happy, bubbly girl,” Yasmina said. “She used to do ballet, she used to run, play, jump, she did all the things.”

But all of that suddenly stopped. Halim said her daughter attended school up until the first grade.

“Lily was falling a little unsteady; doctors thought maybe she had mild epilepsy,” she said.

After genetic testing, Lily’s mom got the news no parent ever wants to hear. Lily was diagnosed with Tay Sachs at the age of 7and a half.

“Life took a turn that we never imagined,” Yasmina said. “Unfortunately, it’s almost like they’re becoming trapped in their own body with this disease.”

Tay Sachs is an ultra-rare, fatal genetic disorder with no cure. The disease destroys nerve cells, ultimately leading to paralysis.

“She does have a lot of therapies,” Halim said. “She has equine therapy, speech therapy, feeding therapy, occupational therapy, physical therapy.”

That is on top of doctors’ appointments, breathing treatments and home school. With the help of one nurse and grandma, Yasmina provides Lily, who’s now 11, the most dignified life she can have.

“Her life expectancy is probably around 15,” she said.

So, they make every moment count. Lily recently put on her flight suit for the adventure of indoor sky diving! She also played sled hockey with the Lightning, all through the nonprofit Wheelchairs 4 Kids !

“It is so important that people become aware of what’s happening with children with rare diseases because they don’t get the funding like the bigger diseases,” Yasmina said.

On the inaugural Rare Disease Day, Lily and Halim visited the State Capitol in Tallahassee to meet with state leaders, including Rep. Adam Anderson of Palm Harbor.

Anderson knows firsthand what Lily is going through; his own little boy, Andrew, died at the age of four from Tay Sachs .

“It is become my purpose in the legislature, and the mission that I have now is position the State of Florida to be a nationwide leader in genetics and gene therapy,” Anderson said.

Anderson sponsored a bill that has since been signed into law, which is named after his son: The Andrew John Anderson Pediatric Rare Disease Grant Program. It is a program that makes research money available for rare pediatric illnesses like Tay Sachs.

“Our children are what matter they are our future, and we should be investing in our children showing our healthy siblings that these children matter because they’re going to shape our future, and I really hope that everybody gets on board with focusing legislature on helping those who need help the most,” Yasmina said.

For the latest news, weather, sports, and streaming video, head to WFLA.