What People Don’t See When My Children Go To School

 Guest Opinion by Jessica Davenport

This year, we made an important decision. We enrolled our children, Kruz and Paizlee, at Legends Virtual Academy, an online public school. People have asked me why we’d make that choice. It wasn’t one we made lightly. The answer starts almost 10 years ago.

On June 30, 2016, we received a phone call that our son Kruz had Schimke Immuno-Osseous Dysplasia (SIOD), an ultra-rare genetic disease. Less than two months later, genetic testing confirmed our daughter Paizlee had it too. Overnight, we became the first family in the United States with two children diagnosed with SIOD. Doctors told us there was no cure and that our children might only live to see 9 or 10 years old. Nothing about life has felt the same since.

Together, our family created a nonprofit. The “Kruzn for a Kure” foundation has raised more than $4.3 million for SIOD research at Stanford, giving future families facing this diagnosis more answers and more hope than we’ve had.

When your children live with an ultra-rare disease, you don’t stop being their advocate when the morning bell rings. You spend every day thinking ahead, preparing for the unexpectedand doing everything you can to make sure they’re safe, comfortable and happy.

Today, Kruz is 13 and Paizlee is 11, and both have lived past expectancy. They continue to amaze us every day. We’ve learned not to measure life by what we lack, but by every milestone we’ve been blessed to celebrate with Kruz and Paizlee. They both manage to find joy every single day despite the storm they face, and they teach us more than we could ever teach them. 

So much of our life has focused on fighting for tomorrow, but it’s important to focus on what today looks like and their best interest in all aspects of life. And the reality is that school has become harder as they’ve grown older – not because they don’t love learning, but because their world asks more of them than most people realize.

As they’ve gotten older, those worries have only gotten bigger. Their hips hurt to the point that now we’re discussing hip replacements. Doctors’ appointments mean missing school, sometimes for days at a time. Traveling to specialists has become part of our normal, and some days, navigating the neuro complications of the disease forces us home. Navigating a life post-stroke isn’t exactly a textbook process.

This year, if we have to leave town for an appointment, we can take school with us. If they’re having a hard day, they can still learn from the comfort of their own home andsafe space.

I think virtual school will also give them something I didn’t realize I needed for them until now: the chance to just be kids, without the stress of navigating the day-to-dayin a traditional setting.

Kruz is obsessed with building giant LEGO sets. After surviving a stroke, he does it all with one hand. This year, he can’t wait to join Legends’ eSports team. Paizlee walks into a room and you instantly smile. Her love for others is something so special, and she has a joy that’s impossible to miss.

This fall, they’ll still have high-quality teachers, classmates and school activities. They’re already talking about making friends, playing Minecraft and going on virtual fieldtrips. The difference is that school may finally fit their lives instead of asking them to fit school.

My husband and I have spent years doing everything we could for our children. We both donated kidneys and stem cells to each of our children. We’ve traveled across the country to pioneer a new treatment to give hope to SIOD families. As parents, we would do anything to help their quality of life, and now that includes school.

For the first time in a long time, I feel like we’ve found a school that meets our children’s needs where they are. I know virtual school isn’t the right choice for every family,but that’s exactly the point. Every child is different, unique and special. Our family finally stopped pushing to make traditional brick and mortar work and started looking for what fits our children’s needs best, and for us, that answer was Legends Virtual Academy.

At LVA, I’ll be their Learning Coach. More importantly, I’m still their mom and biggest advocate. And after everything we’ve been through, I’m exactly where I want and need to be.

Jessica Davenport is an Alabama mother whose two children, Kruz and Paizlee, are the only siblings in the country diagnosed with Schimke Immuno-Osseous Dysplasia, an ultra-rare genetic disease. This fall she enrolled both at Legends Virtual Academy, a tuition-free online public school that is a program of the Tuscaloosa County Schools.

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