Asher was diagnosed with a rare genetic disorder called Spinal Muscular Atrophy (SMA) at just 1 month old. His battle is just beginning!
Follow & Learn
We are grateful for your support, but what we covet most are your prayers and positivity for our family. You can follow along with Asher's story and treatment plan on our Facebook support page: Super Asher vs SMA.
We hope you will take time to become educated about SMA and its impact on people of all ages. Here are a few great resources:
SMA on MDA.org
Clearly, we were caught off-guard by this, as most parents are, and we know you want to help. As a two-working-parent family, we've felt financially stable, but this has rattled our plans. Our priority is to keep Asher SAFE, so as we've started processing, Elizabeth and I have identified these most pressing items:
-Food and meals as we navigate appointments and extended hospital stays with 3 kiddos and a busy schedule. We also anticipate needing to shop differently, because we may have to limit Asher's public outings to avoid exposure to illness.
-Travel to St. Louis and extended hospital stays. As of November, we've been in the PICU over 50 days at Barnes Children's. Our plan now is to keep Asher's primary neurology and pulmonology teams here, which means at least visits every four months once we leave the PICU. We will also travel to St. Louis if Asher needs to be hospitalized, and we have chosen a primary intensivist for him.
-Items and services to accommodate Asher and create safer, cleaner spaces in our home and for our family, such as a video monitoring system for our nursery, stronger cleaning and sanitizing supplies, and a better stroller equipped for Asher's needs. We also anticipate the need for some in-home nursing services. In the future, we foresee need to adapt our home and vehicles to be wheelchair accessible.
-Recovery of lost income. Kory has resigned his full-time position at Isabel's House. While remote and part-time work may be possible, this will drastically alter our household income going forward and also increase the overall cost of insurance for our family. Elizabeth was able to take four extra weeks of unpaid FMLA leave, but this did lower our income for 2018 by around $3,000 at a critical time.
As of November, Elizabeth has returned to work in Nixa, and Kory will be spending the majority of his time as Asher's primary caregiver, whether in St. Louis or at home, whenever we get there.
Without a doubt, we are blessed. Asher does have health insurance on Elizabeth's plan. Still, we anticipate a stack of bills. With 50+ days in a Pediatric Intensive Care Unit and the cost of the medication, PT/OT and speech therapy, and other specialist visits, we will reach our maximum out-of-pocket expenses each year within weeks. Let's hope that it doesn't go up. Let's pray that pre-existing conditions will always be covered.
In the next year, we anticipate our minimum liability to be $10,000 for Asher's care, which is probably low compared to those who may be uninsured or underinsured. Insurance could still deny claims for some services and medications, but so far, the coverage has been adequate. We will keep you updated and share our bills as they are processed.
We have always been honest and open about our financial wellbeing, but right now, we know some of our biggest needs are yet to be discovered. We invite you to learn with us.
We know our family will be helping us along the way, as they are able. So, we are making a promise to you now that any dollars you donate for Asher's wellbeing will be automatically set aside in Asher's own UTMA investment account and allowed to grow until his needs and related expenses are clearly identified. We are also including any gift cards or offline gifts in this page's total, so the number you see on our page reflects EVERYTHING that you have given in support of Asher and our family during this journey.
If we receive assistance from our family or any supplemental insurance that covers or exceeds our expenses related to Asher's care in the coming year, then we will be donating any excess available directly to CureSMA.org, to help more families, expand early intervention, and further the research being done to cure this disorder for good! Thank you, from the bottom of our hearts, for befriending our little Super Asher.
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