Main fundraiser photo

Jim's Myositis Treatment Fund

Hey Everyone,

Our dad, Jim Doiron, has been diagnosed with a very rare Idiopathic Inflammatory Myopathy (IIM) called Necrotizing Autoimmune Myopathy (NAM). According to the Genetics Home Reference website at the National Institutes of Health, only two to eight people per million are diagnosed with IIM annually. Only about 19% of those have NAM.

This form of Myositis has caused his condition to rapidly deteriorate. After noticing some subtle signs in December, symptoms over the last months have included severe atrophy of his proximal muscles (those closest to the spine) in his neck, shoulders, upper arms, abdomen, and hips. It has induced heart palpitations and  affected his pulmonary function. His swallowing muscles have weakened, making eating very difficult (dysphagia) and choking a constant fear. He has developed another related issue, Raynaud's Phenomenon, in which spasms of arteries cause reduced blood flow to his fingers and toes resulting in numbness, pain, and burning sensations. Long-term implications can include heart and lung issues, cancer, and aspiration-induced pneumonia. He is currently not covered by any health insurance.

There is no cure for Necrotizing Autoimmune Myopathy but outcomes can be favorable when treated early and aggressively. He is being treated at Johns Hopkins Neurology, which is a bit of a hike for our parents to drive to appointments, but probably the best possible place for treatment. The diagnostic process alone has already cost over $10,000 out of pocket (blood tests, MRI, CT, EMG, muscle biopsy, exams, etc.). He has begun an oral steroid regimen, however, single drug therapies have not proven to be as effective in the few studies available.  

More aggressive therapies include supplementing steroids with Intravenous Immunoglobulin (IVIG) treatments. Estimates of the cost for this treatment range from $10-15,000 per infusion, and he would likely need 3 infusions over the course of 3 months. Then the steroid would be tapered off and replaced with  a steroid-sparing agent, such as methotrexate or rituximab, that he will need for long-term immunosuppression. These treatments are very expensive, with estimates of $50,000 to $80,000 per year. Physical therapy, recurring blood and muscle strength tests, and other follow up visits will also be needed, not to mention the ongoing steroid-sparing treatments. The relapse rate is high if treatment is discontinued.

We have been very fortunate, but this is out of our reach financially.  We have generally been healthy, and Marketplace insurance premiums increased 30% with a $7000 deductible for 2017 so we opted out – then this happened. Even with coverage, aggressive treatments aren't always supported by insurers and now this is a pre-existing condition, which could be subject to certain conditions.  We are also looking into assistance programs for these treatments.  We are very confident in his doctor and that this treatment will greatly improve his condition, but it will be a lifetime battle.

Those of you who know us, know the lengths Dr. Dad is willing to go to support his family. He is always there for us, whether it is cheering us on at swim meets while
trying to write his dissertation, putting us through college, answering panicked technology related phone calls, teaching us to pour a beer, making us spread sheets to track all kinds of things for us, dropping everything to help us with a craft project, or proofreading all of our papers. He has spent the last 25 years supporting his wife and three children in any and every way possible.  It is now our turn to support him, however, we are three unemployed college students and our mom is already working overtime. So, we are asking, you, our wonderful family and friends for help.

For the past year, we have been planning a family trip to Germany this July. After about 30 years our parents will be returning to the place they met and enjoying their favorite beer with us. We are thrilled to finally see the places we’ve heard about our entire lives and use the language all three of us have studied. Nothing, not even this diagnosis, is getting in the way of this trip! We’d love to see his condition improve enough to enjoy this trip to the fullest, but he needs aggressive treatment to get there.

People keep asking, “What can we do?” With two kids home from school to help our Mom with the daily activities, a definitive diagnosis, and a treatment plan, our answer is, please help us get our Dad the care he will need to fight this! We are so thankful if you are able to give anything or just share this page with others. Your prayers and continued support are very much appreciated.

Always,

The Doiron Children
Donate

Donations 

  • steve leblanc
    • $100 
    • 6 yrs
Donate

Organizer

Alaina Doiron
Organizer
Leesburg, VA

Your easy, powerful, and trusted home for help

  • Easy

    Donate quickly and easily.

  • Powerful

    Send help right to the people and causes you care about.

  • Trusted

    Your donation is protected by the  GoFundMe Giving Guarantee.