Girl’s Rare Condition Forces Her Family To Make One Dramatic Move

Glenn and Cara O’Neill were living a happy life with their two children in Columbia, South Carolina until one day they received terrible news: their 4-year-old daughter, Eliza O’Neill, developed a rare disease that doctors didn’t have a cure for.

Eliza was much like any other child — running around and playing with friends. Her parents enjoyed watching her grow as life seemed to be on a steady course.

Eliza also had a passion for the outdoors, and it often seemed like she wanted to spend more time in nature than inside her home.

However, as time went on, Eliza began showing some unusual signs. She was talking less and less, and certain things she used to remember now suddenly seemed to slip her mind.

Her mother, Cara, concerned for her daughter’s mental well-being, brought her to the doctors to have screenings done. After performing some tests, the doctor came back with devastating information.

Eliza was diagnosed with Sanfilippo syndrome, a rare degenerative genetic disease that causes irreversible brain damage and, eventually, death. Glenn and Cara O’Neill were crushed.

Sanfilippo syndrome is nearly identical to Alzheimer’s. In fact, it’s also known as childhood Alzheimer’s. These sort of degenerative brain problems usually occur in the elderly, but Sanfilippo tragically affects the young.

Both of Eliza’s parents knew exactly what their daughter was facing. It wasn’t going to be long before she completely stopped talking and singing and doing all of the things children do as they grow…

Eliza’s brother spent as much time as he could with his sister after the diagnosis. The two siblings were close before, but her brother now went far out of his way to show love and affection for his sister who desperately needed it.

Cara and Glenn heard about a new gene therapy trial that potentially could stabilize Eliza. However, if their daughter came down with any kind of virus, it would have derailed her chances at being accepted into the trial, so the family took drastic measures.

They isolated themselves in their home for a total of 726 days to ensure Eliza wasn’t exposed to any kind of outside illness. It was extreme, but the love they had for their daughter made every day indoors worth it. But would it save her?

During the almost two years Eliza spent inside, she received constant attention to keep her mind active. Even though Sanfilippo syndrome was slowly deteriorating her brain, her family wanted her to stay as alert as possible, hoping it might stave off the symptoms.

Cara and Glenn started a Facebook page for their daughter in hopes it would spread the word about the disease so people all over were aware of the symptoms. So many people showed their support for little Eliza!

The O’Neill family also spent nearly all of their time raising enough money for the clinical trial. Gene therapy is expensive, and because the trial was in its earliest stages, they needed a large sum of money if Eliza was to be considered.

They raised the money any way they could. Much of it was online through social media pages, but they even did things like sell lemonade to help. They were more than determined to hit their number – Eliza’s life depended on it.

Finally, after two years of fundraising and ensuring Eliza stayed healthy, it was time to find out if the O’Neill’s daughter would be accepted into the clinical trial. Cara and Glenn waited for the doctor’s phone call in the car, and prayed he was going to give them positive news.

Miraculously, Eliza was accepted! Her parents could not believe their luck. After all the time spent fundraising and waiting, their daughter finally had a fair chance at survival.

Not long after Cara and Glenn received the phone call, Eliza went through the one-time clinical trial in Columbus, Ohio. The family was able to end their isolation, and they were excited to see if Eliza would make progress.

Since the one-time trial, Eliza’s parents have been keeping her active, and they have seen a noticeable improvement. She’s not quite able to speak, but her eyes light up when she hears music, and she still loves to spend her time outdoors.

The O’Neill family still raises money through their Cure Sanfilippo Foundation so doctors can continue their research and hopefully bring about more clinical trials. They know that, even with their struggles, there are others in a less-fortunate place.