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One Mom’s Hopeful Fight Against Her Son’s Fatal Disease

Courtesy of Jonah's Just Begun

Updated 11/15/11: On the day this post originally ran, JonahsJustBegun.org got more than 10 times its normal traffic and Parenting.com fans set an all-time record for the number of donations in one day! And Jill was blown away by all the wonderfully supportive comments. You guys are awesome! But the fight for Jonah’s life—and the groundbreaking research that could save it—continues. Vote on Facebook to help their sister organization win up to a $250,000 grant from Chase Community Giving! (Note: you’ll need to allow “Access” and “Like” the Chase Community Giving application on Facebook. You can vote once per charity, but you have a total of 10 votes to use before the deadline of November 22.) Get more info here on the Jonah’s Just Begun blog.

In my ongoing—and largely unsuccessful—effort to wean my 4-year-old twin boys of their stroller addiction, I was dragging them to school the other morning. It’s only a five-block walk, but on many mornings, my boys scream and cry the entire way. To get to school on time, I sometimes attempt to pick them both up, along with their backpacks, lunchboxes, and the jackets they refuse to wear. (Sort of defeats the purpose of not taking the stroller, but…) Needless to say, this solution doesn’t work very well.

This was the situation when we bumped into our neighbor Jill. She was headed to school, too, with her 3-year-old son, Jonah. Though I was mortified at the sidewalk scene we were creating, Jill graciously laughed at the spectacle of us. She attempted to distract the boys. She offered to take the backpacks and lunchboxes off my hands. When I was still struggling to carry/pacify Nate and Theo, she offered to carry one of them, while still pushing Jonah in the stroller, now loaded down with Nate and Theo’s stuff. She couldn’t move the stroller with only hand, though, so we both grabbed a handle and pushed/carried the whole crying crew to school.

When I got back home after drop-off, what struck me most about the crazy morning was not what little imps Nate and Theo are (this much I already know), but what a relief it was to get help from a fellow parent. Besides helping me get them to Pre-K, Jill’s mere calm presence and laughter helped turn the trek from tragic to tragically comic. Sometimes it takes a village just to get your kids to school.

And sometimes—a blessedly few sometimes, thankfully—it takes a village to save your child’s life.

Before that morning, I’d known through mutual friends that little Jonah had a rare, fatal illness. But asking Jill more about it always seemed… uncomfortable. What, was I supposed to say, “Hi, I hear your son is going to die” to someone I hardly knew? But also, I’m not sure I wanted to know more. To be honest, I felt a vague sense of guilt whenever I saw them. I felt guilty that I had healthy children. Guilty that I’d never attended any of the fundraising events for Jonah that I’d seen Jill advertise around the neighborhood. Guilty that I knew this terrible fact about her child but pretended not to.

That morning, though, Jill reminded me how much it means when parents help parents. It’s not just nice—it’s necessary. And it could mean that Jonah gets one more—or 80 more, god willing—years of health. Their story:

At his 1-year-checkup, Jonah’s pediatrician noted that his head size was “off the charts” big and recommended an MRI. Five months later, they got the results: Jonah has Sanfilippo Syndrome, Type C. As Jill describes it on the website she created to raise awareness about and funds for Sanfilippo, JonahsJustBegun.org, “he lacks a crucial enzyme to break down a toxic material that is now accumulating in his body. In time, this buildup will result in any number of injuries to his body: mental retardation, bone deformation, organ and tissue damage, followed by death. There is currently no cure for Sanfilippo Syndrome. 

Brain damage typically begins to set in at age 6. So with each day, Jill and her husband Jeremy live with the knowledge that their son is one day closer to losing himself and losing the abilities to do the things—climb jungle gyms, go to school, throw a ball—that he loves doing now.

When, as parents, we hear about stories like this, we may wonder how we would handle the situation ourselves. How would we live our lives with our child knowing that he has a fatal disease? In a recent New York Times essay, Emily Rapp spoke of being a “Dragon Mom,” of indulging her son, and of loving him “to the end of his life.” How strong could we be?
Plus: How a Dragon Mom Taught Me to Live in the Moment

When I ask myself that question, I’m not sure I would have the same fighting spirit as Jill and Jeremy do. It blows my mind what they have done. Keep reading, please.

Since Jonah was diagnosed so early (most kids with Sanfilippo aren’t diagnosed until they show signs of brain degeneration, around age 6), Jill and Jeremy knew that they had four years, give or take, to find a cure. Jill immediately quit her job as a stylist and has made it her full-time job to find one. To find a cure. This is not like finding the best doctors for your kid, or fighting to get your child into the best school. She has become a red-haired David against the Goliath of drug companies, the FDA, and financial roadblocks. She assembled a team of doctors and researchers; she scoured the world looking for other kids with Sanfilippo so they could develop a natural history of the disease; and she set up a non-profit organization (JonahsJustBegun.org) that raises money to fund three different streams of research. She connected with the families of 18 other American Sanfilippo kids, and has shared her hope with them—hope they didn’t think they could have.

It is a race against the clock to stop the progression of Jonah’s disease before it catches up with him.

But you know what? Though it seems impossible, it is happening. One of the researchers they’ve been funding has developed a very promising drug. The drug could help Jonah and hundreds of kids around the world. The groundbreaking science used to develop the drug, too, could help in developing treatments for dozens of other conditions, including some cancers.

But the process of getting a drug to clinical trials is arduous, expensive, and filled with red tape. Jill is fighting the FDA to speed up the approval process for drugs that treat pediatric fatal diseases. I wouldn’t even know how or where to begin.

She has created a model of advocacy for any parent who is told their child’s case is “hopeless.”

So… my bad morning with Nate and Theo? Put in perspective. Dealing with my kids at their worst is part of knowing and loving them wholly. And knowing and loving my kids is such a heart-wrenching privilege. But this is not about feeling lucky and blessed relative to others. It’s about helping other parents. Because we understand that heart-wrenching love and the unimaginable pain that would be left if we lost it. And because we all need help sometimes. Jill, Jeremy, and Jonah need it now.

If you’d like to help, visit JonahsJustBegun.org to learn more, make a donation, and spread awareness. They are so close to a cure.

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