Like you, my heart sank and my eyes welled up with tears. The pictures broke me in half. The ACA saved my life, but I’m 43 years old, not 4 years old. A few hours later I saw the same woman tweet to me directly with the same pictures of the same little boy with 2 distinctive, connecting Y-shaped incisions spanning a better portion of his head. She linked the tweet I had seen earlier and I wanted to respond with some kind words, something supportive, something hopeful that she could take in and remember for a few minutes to ease the worry very temporarily. I always have the words in situations like these, but I didn’t have any words for her. I sat there for about 10 minutes and still nothing came to me. It was the strangest feeling. When I have nothing to say it means hell has frozen over and pigs fly, or maybe there's a different way to offer support because words don’t work for everything. Words without actions are just sentiments of decency that will slip away far too soon. One of the most powerful things a person can do is stop talking and start helping. And the most important thing you can do for another human being is validate their feelings and journeys. People need to hear others say if they were them, they’d be upset, too...or they’d be happy, too. It’s a way to let others know we feel their pain and want to do something to help conquer it *with* them. I don’t know if I’m the best person to attempt this, but I have to try. So I tweeted this to her and held my breath:
I got lucky, she said I could do this for her. Here is our public exchange before we took everything to email:
So here’s what I’ve learned about this amazing little family. The woman’s name is Ashley, she’s 30 years old, and her 4-year-old son is Jackson. She has a second 7-year-old son named Elias, as well, and she is a single parent that receives great relief from CHIP, SNAP and the ACA Medicaid expansion, which is saving Jackson’s life in every way. The CHIP Ashley relies on for Jackson’s brother expires in January 2018, which is frightening all by itself. Orrin Hatch was recently asked why CHIP hasn’t been renewed and he said, “I have a rough time wanting to spend billions and billions and trillions of dollars to help people who won’t help themselves – won’t lift a finger – and expect the federal government to do everything.” Mind you, he’s talking about CHILDREN not lifting a finger to support themselves while 1% of the tax bill he just voted for would fund the entire CHIP program. When it comes to children's healthcare, America is always too poor. This is cruel and usual punishment for anyone born sick or different. We euthanize dogs in a more humane way. This is literally neglecting human beings to death by making healthcare unaffordable and inaccessible. Ashley has had a truly outstanding career all the way up to September 2016, when she had to quit her job to take care of Jackson full-time. Imagine going from 6 figures to thousands of dollars in the hole. That's what she did. She has used all of her savings over the past 15 months and is at risk of having creditors taking out a lien on her home. The debt she has is from Jackson's medical procedures and she lacks the money to hire an attorney to file for bankruptcy, which would provide much-needed relief. To add insult to injury, her house flooded last summer due to a burst pipe and she hasn’t been able to finish the repairs because her homeowner's insurance has been canceled.
Ashley isn’t some random woman taking advantage of our government. She’s a successful, loving American mommy that's just like you and me. A serious life event happened and she needed help. She had a baby that was born with rare, lethal disorders and researched how she could receive help. Our government expanded Medicaid to literally sustain lives exactly like 4-year-old Jackson, so she uses it. Her son Elias needs healthcare, too, and all her money has to go toward Jackson’s healthcare, so she uses CHIP for Elias, which is exactly how the program is supposed to be used. And since she has crippling debt from Jackson’s medical needs, she uses SNAP to help her put food on the table to keep her family of 3 nourished and healthy. Again, this is exactly how this program is supposed to be used.
Let me talk about 4-year-old Jackson a bit. He was born in 2012 with Adrenal Failure, which was/is life-threatening, and Craniosynostosis, which was diagnosed at 8 weeks old. His first Craniotomy was at 13 weeks old, as it was necessary to remove over half of his skull to relieve intracranial pressure and make room for his brain to grow properly. He has had 3 Craniotomies and Cranial Vault Distractions to date, and on the day this campaign is launched, December 4, 2017, he goes in for his most invasive, serious cranial surgery yet.
Let me explain more about what Craniosynostosis is. Jackson's skull plates are fusing together at the seams creating bone instead of expandable fibers, which leaves his growing brain trapped in a skull that can not expand. The pressure that builds inside his head causes visual impairment, sleeping impairment, eating difficulties, and/or an impairment of mental development combined with a significant reduction in IQ. Doctors must manually expand his skull to allow his brain to grow properly, all while keeping his head shape symmetrical. Our skull is made up of plates that fuse together with bone, which completes when we are in our early 20s. Jackson’s skull is fusing together with bone right now. He was born this way. Helmets are necessary to keep the skull symmetrical or else his head would become very noticeably deformed. When you manually expand a skull, you must also keep it in line. Helmets enable the shape of his head to remain symmetrical instead of lopsided.
Jackson’s Craniosynostosis has created other issues seen in most other patients, as well. Over the years he's been followed by two dozen specialists and worn corrective helmets that are $4k each and never covered under American healthcare insurance, he’s been surgically treated for chronic ear problems stemming from his Craniosynostosis, and diagnosed with Autism Spectrum Disorder. He has in-home and clinical therapy 5 days a week that started when he was just 15 months old. He has had bone grafts and titanium plates placed over 2/3 of his skull. And he has undergone treatment for a pituitary tumor and HGH insufficiency due to Adrenal Failure and intracranial pressure. His mother and brother are always by his side.
It’s quite obvious Jackson will suffer exponentially because of the sabotage to the ACA by Trump’s Executive Orders and the GOP Tax Bill. Jackson was lucky enough to be born in 2012 when the Affordable Care Act was already law. It would be a travesty to lose just the CHIP she uses for her healthy son, which she must use because Jackson’s needs are overwhelming. Her debt is building up because of mounting medical bills over the last 4 years. While Medicaid doesn't pay for all of Jackson's treatment, it provides her with minimal coverage to, at least, help him. By no means does it provide everything for someone like Jackson, which makes the out-of-pocket expenses something that will severely cripple any American family that once had luxuries, financial security, and savings. Ashley said some things that really made me sad to think about, but that’s what I do for a living. I deal with the things that most people would do anything to avoid, let alone *want* to study just to make sense of it. Ashley said she wakes up in the middle of the night completely panicked that the next day there will be a lien on her home. That is alarming, to say the least. That's not living, that's surviving despite the horrors she has to face. She is overwhelmed and entirely alone. Right now she is trying to get a job she has absolutely no time or energy for just to bring in some more money but job prospects are very few and far between because she's overqualified for entry-level positions. Meaning any job at a local grocery store would never hire her. When you're overqualified for a position in America, you're never hired. She worked in investments. The only way she can go back to that life is if her sons were both healthy. There's no way anyone will hire her in her own field when she has a sick toddler in need of care. Her old job is a job that requires at least 40 hours a week. She is the living embodiment of someone who falls through every single crack in American life.
I want to try to raise some money for her through telling her story. If I can raise enough money for her to pay off her son's medical bills and hire a lawyer to file bankruptcy she can rest a little bit easier. It’s Christmas time and she’s a Christian that has been shunned by her church, which she was part of for over a decade. Two years ago she decided to divorce her husband after he committed adultery. Her ex-husband is a high official in her church. The church disconnected entirely, seemingly to shame her, which left her broken-hearted and alone. Ashley says she’s still a Christian and has resorted to praying to God for help every day. I can attest right now I’m certainly not sent by God, but I’m here and I know how to write well enough to tell her story. Ashley says, "If my story helps just one person, it’s worth it." I agree with her. The time it has taken me to get to know her story and write it down is completely worth it if it touches or helps just one person. If we raise just one dollar it’s proof someone else cares enough to stand with her during this time of uncertainty, worry, and pain. Any form of support from strangers can change a person’s life. I've been supported emotionally by strangers so many times. There's nothing in this world quite like it. Personally, I think it’s time for Ashley’s life to change. She deserves to have support through this American nightmare that could happen to any of us at any time, and I feel she's suffered enough. No one can do what she's doing forever, and she's doing it all by herself. The first day of this campaign will be on Monday, December 4, 2017, the day Jackson goes in for his 4th Craniotomy and Cranial Vault Distraction, which takes months of rehab to recover from without any complications...but Jackson tends to a have serious complications. This is what Ashley told me about Jackson's surgery on December 4th, "He’s *likely* having a Cranial Vault Distraction which means they’ll take the whole head apart, put it back together with screws on the outside; that I will have to turn twice a day with a special screwdriver for 3 months. Then another surgery to remove them." The fact that she put asterisks around the word *likely* tells me the surgeons are prepared to see something they couldn't see in pre-operative tests. It tells me they are ready to find something previously unseen when they open his head, and that they may have to do much more than what's planned.
December 4, 2017, is a mere microcosm of what Ashley's family must endure every second... minute... hour... day... week... month... and year. And her family feels every second like an hour, and every hour like a day. When people are in a state of worry and fear it tends to make slow, deep impressions on us that last a lifetime. You will remember what that pain felt like from many years ago before you remember anything monumentally happy that's happened in your life up until that point. Yet, when we have moments of joy and are able to be carefree it seems to last only a second and it's not remembered as well as the trauma. These pockets of beauty are so coveted when you are in chaos, and Ashley has seen too little of them for far too long. Her life is a journey through the unknown compared to most people, where all she has are many small celebrations just for getting through a night without too many obstacles. Literally, every day Ashley sustains all three of her families lives, so much has been accomplished without any noticeable results that are typically taken for granted by those of us that don't have the same hardships. A person will feel like they're constantly spinning their wheels in mud, and that's an extremely frustrating, humbling, destructive state to try to live in happily. The rehab from cranial surgery alone is grueling, to say the very least, and today Ashley's family will enter a world of volatile pain and fear that they have seen too many times before. There is no template for pain. Each experience is a different hell.
The only thing I want for Christmas this year is for her to have more support and love for all her years to come. What can I say, I dream big or not at all. I'd like Ashley to be able to focus on Jackson's healing rather than live in a state of pure panic and uncertainty. I want her to sit down with her boys and watch a Disney movie. I want her to create new memories that will be cherished and remembered by her sons when they're middle-aged men. I want Ashley to dare to hope once again and have the resources and love to stay there while she must face her duties as a good mommy. So, thanks for letting me share her story with you. It's something I felt I had to do, and I'm more than honored to have been allowed to tell it to whoever wants to read it.
Scroll down for a brief video on Craniosynostosis and more photos of Ashley, Elias, and Jackson.
Brothers Elias and Jackson ↓
Baby Jackson with his little helmet shaping his head ↓
Jackson with his little helmet and big brother Elias ↓
Jackson comfy at home ↓
Ashley, Jackson, and Elias ↓
Jackson's skull showing his plates fused together ↓
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