Nearly five months ago, we pulled our kids out of school and quarantined our family. This wasn't a decision we were thrilled about, but we felt it best in our situation. You see, my daughter Eliza has a disease called Sanfilippo Syndrome.
No, Sanfilippo is NOT contagious (like Ebola or Enterovirus). It is a genetic disease... it can't be spread.
So, why did we choose a self-imposed quarantine?
In short, so that Eliza does not get any type of sickness or virus, and with the hope that she will be a great candidate for a clinical trial, her only chance at life. She's nearly 5 years old, and given the course of the disease, things will get worse, very fast. My wife (a doctor who works with special needs children) and I know too much about this disease... we've heard too many nightmarish stories from parents of older kids with Sanfilippo who have gotten sick around this age. For many of these children, an illness at this stage pushes them even faster downhill, losing precious skills. For us, we felt the safest way was to quarantine our whole family temporarily.
It sounds crazy to ever say the word "fortunate" when dealing with this disease, but our family has been very fortunate to be able to take this cautious step and quarantine ourselves and our children. My wife stopped working and now homeschools (as best she can) both of our children, while I work from home, grateful that my company has been supportive and allowed me not to travel like I normally would in my job.
So, what does life look like for a family in self-imposed quarantine? A lot of play in the backyard. A lot of Skype. A lot of madness and stir-crazy parents and kids. A lot of support from friends and family in providing things we need.
We get our groceries and anything else delivered to the front door. You'd be surprised at how hard it is to figure out what you want from the grocery store when you can't walk the aisles. We wipe everything down with antibacterial wipes constantly. Our only times out are when we all go for rides in the minivan, sometimes to a deserted beach. But we don't come into 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.
As we ride through town, we see our kids look longingly out the window at people and kids and families... and it's hard. Our daughter Eliza loves the zoo, but we don't go any more. And my Thursday night date night with my wife is just a memory now.
The birthdays and the holidays are going to be the roughest on the kids. 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.
But on the plus side, the reason we are doing this is working so far: Eliza is healthy (well, as healthy as a 4-year-old with a terminal illness can be). She used to have frequent ear infections, colds and coughs, but she's had none since our house arrest began. The rest of us haven't been sick once, either.
The first few weeks were very hard, but it has become the new normal. One hundred and fifty days is a long time, but we will go to any lengths... we'll do this as long as it takes.
The hard-to-swallow truth is that these days may be the best we get with Eliza, now that she can still talk and play. No one knows for sure what the future holds for her. We fight -- as a family and the founders of a non-profit foundation for all kids -- to fund a treatment that has stopped the disease in animal models (see our story at www.SavingEliza.com). The race is on for my daughter to have a chance, and a clinical trial in humans is potentially only months away. We don't know if she will be chosen, but I can't help but close my eyes and imagine the day she goes in for treatment. That thought, along with the amazing outpouring from around the world, gives me the strength to just keep going, despite these trying circumstances.
As different as our life is now, I cherish these "crazy days" stuck inside the house with the three people I love most in this world. Normally, both of my children would be at school and my wife at work for the better part of the week. Family time, as it is for many people, used to be limited to nights and weekends. We now get tons of time together, but our days like this are quite literally numbered. Each new day is a step backwards for my daughter.
And so, I want to spend every waking moment with Eliza, enjoying everything she has to offer this world. Her potential is unlimited and every night I tell her how proud we are of her. It is my absolute honor as a father to do everything I can to save her life. One hundred and fifty days down, who knows how many more to go... but it's nothing compared to what she is dealing with. She will make it, and one day soon, she will be back out in the world.
For more information and to see Eliza and our family's story, please watch the three-minute video at www.SavingEliza.com. Follow the latest at http://ift.tt/1iklJwL
Read Eliza's mother's account of the family's quarantine here.
Like Us On Facebook |
Follow Us On Twitter |
Contact HuffPost Parents
from Healthy Living - The Huffington Post http://ift.tt/1p7ZJuV
via IFTTT
No, Sanfilippo is NOT contagious (like Ebola or Enterovirus). It is a genetic disease... it can't be spread.
So, why did we choose a self-imposed quarantine?
In short, so that Eliza does not get any type of sickness or virus, and with the hope that she will be a great candidate for a clinical trial, her only chance at life. She's nearly 5 years old, and given the course of the disease, things will get worse, very fast. My wife (a doctor who works with special needs children) and I know too much about this disease... we've heard too many nightmarish stories from parents of older kids with Sanfilippo who have gotten sick around this age. For many of these children, an illness at this stage pushes them even faster downhill, losing precious skills. For us, we felt the safest way was to quarantine our whole family temporarily.
It sounds crazy to ever say the word "fortunate" when dealing with this disease, but our family has been very fortunate to be able to take this cautious step and quarantine ourselves and our children. My wife stopped working and now homeschools (as best she can) both of our children, while I work from home, grateful that my company has been supportive and allowed me not to travel like I normally would in my job.
So, what does life look like for a family in self-imposed quarantine? A lot of play in the backyard. A lot of Skype. A lot of madness and stir-crazy parents and kids. A lot of support from friends and family in providing things we need.
We get our groceries and anything else delivered to the front door. You'd be surprised at how hard it is to figure out what you want from the grocery store when you can't walk the aisles. We wipe everything down with antibacterial wipes constantly. Our only times out are when we all go for rides in the minivan, sometimes to a deserted beach. But we don't come into 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.
As we ride through town, we see our kids look longingly out the window at people and kids and families... and it's hard. Our daughter Eliza loves the zoo, but we don't go any more. And my Thursday night date night with my wife is just a memory now.
The birthdays and the holidays are going to be the roughest on the kids. 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.
But on the plus side, the reason we are doing this is working so far: Eliza is healthy (well, as healthy as a 4-year-old with a terminal illness can be). She used to have frequent ear infections, colds and coughs, but she's had none since our house arrest began. The rest of us haven't been sick once, either.
The first few weeks were very hard, but it has become the new normal. One hundred and fifty days is a long time, but we will go to any lengths... we'll do this as long as it takes.
The hard-to-swallow truth is that these days may be the best we get with Eliza, now that she can still talk and play. No one knows for sure what the future holds for her. We fight -- as a family and the founders of a non-profit foundation for all kids -- to fund a treatment that has stopped the disease in animal models (see our story at www.SavingEliza.com). The race is on for my daughter to have a chance, and a clinical trial in humans is potentially only months away. We don't know if she will be chosen, but I can't help but close my eyes and imagine the day she goes in for treatment. That thought, along with the amazing outpouring from around the world, gives me the strength to just keep going, despite these trying circumstances.
As different as our life is now, I cherish these "crazy days" stuck inside the house with the three people I love most in this world. Normally, both of my children would be at school and my wife at work for the better part of the week. Family time, as it is for many people, used to be limited to nights and weekends. We now get tons of time together, but our days like this are quite literally numbered. Each new day is a step backwards for my daughter.
And so, I want to spend every waking moment with Eliza, enjoying everything she has to offer this world. Her potential is unlimited and every night I tell her how proud we are of her. It is my absolute honor as a father to do everything I can to save her life. One hundred and fifty days down, who knows how many more to go... but it's nothing compared to what she is dealing with. She will make it, and one day soon, she will be back out in the world.
For more information and to see Eliza and our family's story, please watch the three-minute video at www.SavingEliza.com. Follow the latest at http://ift.tt/1iklJwL
Read Eliza's mother's account of the family's quarantine here.
Like Us On Facebook | Follow Us On Twitter | Contact HuffPost Parentsfrom Healthy Living - The Huffington Post http://ift.tt/1p7ZJuV
via IFTTT
No comments:
Post a Comment