Family Lives In Quarantine For 700 Days To Save Their Daughter’s Life
Alzheimer’s is a devastating disease for the affected party, but for their family and friends as well. As those with experience will testify, it’s an emotional nightmare watching a loved one lose the memories of their life.
Six-year-old Eliza O’Neill and her family are very familiar with the effects of Alzheimer’s. The South Carolina family received some tragic news about two years ago that their previously healthy daughter had a very rare degenerative disease called Sanfilippo Syndrome, Type A, also nicknamed Child’s Alzheimer’s.
The disease causes it’s victims to lose basic functions, and in Eliza’s case that includes reciting the alphabet, singing her favorite song, and even telling her parents that she loves them.
“It affects the brain so quickly,” Glenn O’Neill, Eliza’s father, commented regarding the disease that is currently incurable. Even with little hope of a cure, Glenn hasn’t stopped trying to find one. The devoted father started a foundation and was able to raise millions of dollars to get his daughter a special treatment.
In order to qualify for this experimental treatment, Eliza, and her family spent roughly 700 days in their home in complete isolation from the outside world. The reason for the self-imposed quarantine is that Eliza’s parents were warned that if she acquired a virus of any kind, she would be unable to participate in a very promising gene therapy trial.
“It was a really tough decision to make,” said Glen. “Initially, it was supposed to be 100 days, which became 300 days, and then 500 days.” With the quarantine period being much longer than the family initially expected, holidays, birthdays, and gorgeous days were all spent in their home.
The call that the family was desperately waiting for finally came this Spring. Nationwide Children’s Hospital informed them that the study was officially beginning.
“After this lengthy amount of time passed and how difficult the journey was, you just get really paranoid,” said Glen. “All I wanted was to just hold her in my arms and not let go.”
When the doctors came out of the treatment room and said that Eliza had received the medication, her parents let out a huge sigh of relief that it was finally happening. The parents are hoping to pay it forward by continuing to raise more funds for this rare condition and help other children.
You can learn more about Eliza’s journey by watching the YouTube video below. You can also help the cause by checking out her GoFundMe page and sharing it with your friends.
This story is an amazing reminder of the great lengths that a family will go to in order to help one of their own, and motivation for us all to do more for others.
Let’s all keep Eliza and her family in our thoughts, and we hope that the spotlight of this story will continue to shine on those battling the rare Sanfilippo Syndrome.