The O’Neill family from the United States has been living in a self-imposed quarantine now for over five months to protect their five year old daughter Eliza.
No, Eliza does not have Ebola or any other contagious disease, but her parents Glenn, 42, and Cara, 39, have gone to extreme lengths to protect her.
Eliza has a rare genetic disorder known as Sanfilippo Syndrome-Type A. The disease causes the body to deteriorate rapidly, if left untreated, could lead Eliza to lose the power of speech and the ability to walk within months. Any contact with outside illness could cause Eliza’s condition to rapidly decline.
So the family decided to cut themselves off from the world, quit their jobs, pull the kids out of school and isolate themselves at home in a self-imposed quarantine.
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“We did it because we’re hoping Eliza will qualify for a clinical trial that is her only chance of surviving this degenerative, terminal disease,” Eliza’s father Glenn says.
Glenn and Cara have written about their new life on their blog. Glenn writes: “We get our groceries and anything else delivered to the front door… Our only times out are when we all go for rides in the minivan, sometimes to a deserted beach. But we don’t come in contact with people or anything people have touched. If we stop at a gas pump, only my wife or I get out and we wear masks and gloves. We don’t go inside any stores.”
The family share precious moments from little Eliza’s life to their Facebook page.
In the blog the loving parents speak of their disappointment at no longer being able to go to work. Cara says she is particularly affected having to quit her job as a passionate paediatrician for special needs children, which is how she came to so quickly understand the full gravity of Eliza’s diagnosis.
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But the couple’s children have been most profoundly affected by the isolation.
“There will be no friends over for them to play with on their upcoming birthdays. There will be no Trick or Treating this Halloween. We’ll be that house with the lights off. No festivals. No visits to see Santa. Not this year,” Glen writes.
The family have cut themselves off from the world even further, by choosing not to have a TV in the house, another choice to help Eliza’s condition.
“We also have no TV in the house by choice. Eliza’s speech is much better when she isn’t addicted to the TV. Children with this Syndrome can be obsessive on things (more than a regular child who has tantrums when TV is turned off),” Cara writes.
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Glen and Cara are acutely aware of the painful irony of locking Eliza away from the world when she’s at her healthiest, but they say they are only doing what they think is best to protect her.
“Given the normal course and degenerative nature of Sanfilippo Syndrome, now is Eliza’s best time to actually be able to do things out in the world. With our decision to not go out, we are in essence, taking those experiences away from her. We’re doing all of this in the hopes that we will actually be giving her the best chance at a full future, but it is still very hard to reconcile in our minds,” Cara writes.
But there is hope though for Eliza and her family. Researchers at Nationwide Children’s Hospital have discovered a breakthrough gene therapy treatment that can stop the disease in its tracks and save Eliza.
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The treatment is still at trial stage and needs $1.8 million to go through with the clinical trial. The O’Neill family have done everything in their power to make that happen, including releasing a viral video telling their story that has now seen them raise over $1.2 million.
The clock is ticking though as Eliza could begin to decline any day now and the family dreads the day where she reaches “the tipping point when her disease will take an irreversible turn for the worst”.
Until the treatment is available, the family say they will continue living in self-imposed confinement as Cara and Glenn continue their campaign for her.
“We will go to any lengths,” Glenn said. “We’ll do this as long as it takes.”
Click here to visit their Gofundme Fundraiser page and help contribute to the cause.
