<div>Update: 4/26/2026
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<div>Hi friends,
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<div>It really is hard to make this post. For those who have been following Rogan’s autism journey, you know of some of the challenges that we have been facing. Most recently, a new diagnosis of epilepsy and the discovery of a rare gene (DYNC1H1) that directly affects his neurological and physical development, gut health, motor function, severe sensory challenges, causes epilepsy among many other challenges. 
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<div>We have been coordinating care between his pediatrician, outpatient therapy, Hurley neurology, Genetics at Sparrow and U of M and his biomedical Doctor.
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<div>We see the symptoms of these conditions. They affect his quality of life every day. We have had to work backwards to find the “causes” of these symptoms. A majority of the expenses that we face are not covered by insurance. There are effective treatments out there that he can significantly benefit from but unfortunately we are only able to do the proper interventions only as we can afford them and we are losing valuable time in between. 
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<div>For his conditions, it’s been recommended that we start neurological focused chiropractic care which runs upwards of $5,000+
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<div>A PBM therapy laser device that can safely and effectively be used at home $1,350
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<div>Regular microbiome testing to receive proper continued guidance from his BioMedical Doctor $200ish per test
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<div>Follow up biomedical appointments $250 per visit
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<div>Additional labs that run $400 each for tests that will give insight on things like his mitochondrial function and metabolic Imbalances. 
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<div>All of these costs are on top of the costs that we are already stretched thin on such as $400+ a month for outpatient therapy, $400+ a month for supplements and prescriptions, copays for basic lab testing, MRI and EEGs, specialists, DME and everything else in between. 
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<div>We don’t dine out, we don’t go out with friends, we don’t pay for entertainment. Any dollar that we have left after paying our other bills, goes towards Rogan’s care because we are determined to help him reach his full potential. I purposely don’t post much about our “hard” moments because he deserves the dignity and respect to keep that private. Believe me when I say, he is struggling. If he weren’t, I wouldn’t be spending every free hour trying to help him. I wouldn’t be waking up several times a night to make sure he’s breathing okay and hasn’t had a seizure. I wouldn’t be stressed about malnutrition because his sensory aversions and gut issues make it impossible for him to eat. I wouldn’t be walking on egg shells around my own house trying to keep him regulated. I wouldn’t be trying to comfort him, feeling helpless when he can’t communicate what is hurting/upsetting him.
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<div>The thing we need most is affordable and accessible care that starts his healing from the root. Things like speech/occupational therapy and even supplements/medication can only be so effective when there is a constant sensory storm brewing inside his little body. He is constantly in discomfort and fight and flight.
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<div>We are glad that we finally have some answers and some direction about what best next steps can help him. Unfortunately, the cost of such treatments is more than what we can even think about affording right now as a family with one income. Many autism families become one income families as one parent often becomes the dedicated caregiver and navigating therapies and appointments. It was a choice we had to make. I have no regrets leaving the work force and prioritizing Rogan’s wellbeing and development over everything. It’s very humbling asking the public for donations. However, by not doing so, I would be doing a disservice to Rogan and prolonging the access to the treatments that he needs even further.
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<div>Thank you so much to those who have previously contributed. The $1,000+ that we received helped us to get him started with his biomedical doctor to begin his gut healing process and we cannot thank you enough.
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<div>If anyone is able to donate or share, we will be beyond thankful. We look forward to sharing positive updates soon! 
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<div>As many of you know, our amazing son Rogan was diagnosed with nonverbal moderate/severe autism shortly before his 3rd Birthday. Upon his diagnosis, I left my career to be able to dedicate all of my time to his wellbeing and development. He’s now 4.5 and I couldn’t be more proud of how far he’s come. He’s been attending an autism specific preschool since he turned 3 and has been receiving occupational and speech therapy since he was about 16 months old.
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<div>Unfortunately with autism, comes many underlying medical comorbidities that are not only extremely uncomfortable, but also hinder one’s ability to progress in many areas and to live a quality life.
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<div>Since autism is such a complexed diagnosis, there is not a “one size fits all” approach which leads to many interventions not being covered by insurance. This means, effective treatments cost thousands of dollars out of pocket for families like ours, ultimately getting in the way of their children getting the help they need or families putting themselves into major debt year after year.
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<div>We have the opportunity to work with one of the best functional medicine Doctors in Michigan who has been successful in treating many of the coexisting issues with autism which ultimately leads to better quality of life and the ability to break through the barriers that are preventing one from being able to communicate, to eat a balanced diet, to improve sleep, to become potty trained among many other obstacles that we face on a daily basis.
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<div>Since covered treatment options for autism are pretty much currently limited to just therapy and psych meds, neither of which address the root medical issues that are causing behaviors, that hinder progress, that take a toll on one’s overall wellbeing day in and day out, we are looking at initial costs that estimate to be around the following:
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<div>$500 for first consult
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<div>$250 ish for each follow up appt
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<div>$2,500+ for labs
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<div>$500+ a month for supplements
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<div>This is of course on top of therapy costs that will be hundreds of dollars a week at the start of the New Year.
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<div>The goal will be to meet with our Doctor, complete comprehensive labs that will provide insight on his vitamin/mineral/omega levels, mitochondrial function, brain chemistry metabolism, intestinal infections, gut microbiome, toxin/mold/yeast, food sensitivities, additional genetic tests and anything else that is necessary.
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<div>We will then start treating these issues with the appropriate diet and supplements under the direct care of our Doctor instead of us continuing to shoot in the dark. These are all well known issues that coexist with autism, yet, are still not covered through insurance.
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<div>Our hope is that like many others who have had success, we can help Rogan’s body to heal on the inside so that he is no longer in severe discomfort, to treat infections, reduce inflammation, remove toxins, improve his gut/brain health..etc, which will carry over to everything he does. The hard truth is, that without addressing these root medical issues, all of the therapy in the world will not be enough. We have spent thousands of dollars on therapy with minimal results, even working with great therapists. Ironically, as soon as we added folinic acid (a vitamin) to Rogan’s list of current supplements, he finally started speaking some words. This goes to show how important it is for us to understand the chemistry that is occurring within his body. If one vitamin could be the difference between him being able to speak and being nonverbal, I can only imagine how much he will gain from addressing all of the underlying in-balances. With that said, folinic acid can only be minimally effective as well until we treat underlying causes.
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<div>We made a promise to our son that we would do whatever is necessary to help him thrive. I tell him every night how amazing he is, how proud we are of him and that we won’t ever give up on helping him. We see the determination that he has. We see his suffering every single day with his gut health, motor planning (speech), sensory adversions and anxiety. We see his frustration behind closed doors that many do not see. There is no way to explain the pain that comes with raising a child who can’t communicate with us when he is hurting, when he’s sad, or when he’s frustrated. Many serious medical conditions go undiagnosed simply because of this which makes it even more important that we take these steps now.
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<div>We know so many people have supported and followed Rogan’s journey which we have always been so thankful for. We wanted to put this information out there to everyone in case anyone is able or willing to contribute towards his healing and continued progress. I’ve put off creating this fundraiser because we really don’t like to ask anything of anyone. The truth of the matter is, autism is so incredibly expensive, especially to those who don’t qualify for any assistance. Autism is a life long diagnosis and therefore we will always have many extra expenses.
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<div>Rogan is such an amazing boy. We know we have a long road ahead but we are hopeful. We have learned so much from the autism community and we know that this is the best next step that we need to take to help him thrive.
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<div>We look forward to sharing Rogan’s continued success and are so incredibly thankful for our village of family, friends, therapists, teacher and parapros. Also very thankful for the autism community which includes some of the very best people!
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<div>Thank you again for your support!
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<div>The Stephenson Family
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Rogan’s Autism Journey - Epilepsy & Rare Gene Disorder

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