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Our Story

 
My name is Hannah, at the age of 16 I was diagnosed with Juvenile Myasthenia Gravis (MG). As I got older, my MG became more severe. I was told that I was in respiratory failure. In October of 2014 I had a thymectomy; unfortunately, this surgery did not put me in remission as we had hoped it would.
 

Last summer after returning from my Make a Wish trip, I caught the common cold and nearly died. I was fine in the morning but come evening my parents were rushing me to the Emergency Room. By the time they got me on a gurney, I was in full respiratory arrest. I was sedated and intubated.

After a week on ventilator support, it was apparent that I was not going to recover quickly so I had surgery to place a tracheotomy and a G tube. I lost all the mobility I had gained through therapy and hard work. Before this respiratory crisis I was able to walk around on my own. Now I am dependent on a walker in the house and use a wheelchair for anything further.I require assistance just to transfer from a chair to standing or into my wheelchair.

The scariest part about this story is that this could happen again at any time, without warning. I often wonder what if we made it to the Emergency Room five minutes later?

It was during this hospital stay that my status was moved to Juvenile Refractory Myasthenia Gravis. I’m dependent on a procedure called plasmapheresis that I get 3 days a week. I’ve had over 300 so far; however, this is not a cure. In addition to that I’m on steroids, immune suppressant medications, chemotherapy and so much more.

All of these treatments are very intense and leave me with little quality of life. I experience severe joint and muscle pain from the chemo and other drugs, chronic wounds due to the steroids, as well as chronic severe nausea, fatigue, electrolyte imbalance and increased bleeding due to the plasmaphereses. My family and I are taking the next step in treatment and hopefully I will be getting a bone marrow transplant so I can live a fuller life.

Unfortunately, there are very few treatments for MG that are FDA approved and that includes Bone Marrow Transplants. Insurance at this point has denied coverage even though we have petitioned for reconsideration. That means we need to find a way to pay out of pocket for the full amount of the transplant, about $500,000.

Family and friends have started a campaign to raise funds for Children’s Organ Transplant Association (COTA) in my honor. All contributions to COTA will be used to assist with transplant-related expenses.

The Children's Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.

Comments

  • Andrew And Rachelle

    We're rooting for ya Hannah!

  • Timothy Butterfield

    I am Hannah's Uncle and I want you to donate please......!!!!!!! Start now, doit,...get on with it......

  • cjbutter

    Hannah - you are the toughest person I know, and you keep smiling and willing to help others fighting MG as well. You are an amazing young woman!

  • Anne and Orrin

    Hannah - Keep up your zest and the positive attitude. Its encouraging to all and we pray for the good things to follow for you. Love G'ma & G'pa

  • The Faracis

    We feel so lucky to be part of your extended family! Never ever give up Hannah! We can totally do this!!!!

  • Kathy Carpenter

    Let's get this done - we can do this for Hannah!!

  • Becky Pritchard

    We are all thinking about you Hannah! Love from Washington, DC!!

  • Vicki Krueger

    Dear Hannah, You are a brave girl and an inspiration to all of us. I'm keeping you in my my thoughts and prayers.

  • Megan (O'Shea) Lillich

    I wish I could donate and help you- but I too am fighting 3 autoimmune diseases, lupus, RA and Addisons disease. you are a strong and beautiful women know that there are thousands of people reading your story on fox news right now praying for you. I run a face book page for RA its not you disease but we deal with a lot of the same (though not to the extream you do) issues. its called Squeaky joints. its just a fun place to let off steam and vent. i push my facebook name in the name portion message me and i will add you if you want

  • RuthinMN

    My heart goes out to Hannah because this could have been me! Following a time of sudden extreme double vision, I was diagnosed with Myasthenia Gravis which can be limited to an Ocular type (eyes only) or the all-body type which she has and I found out I had. I was blessed to have wonderful, quick care and surgery for Thymectomy which DID put me into remission. After time for my body to adjust from thymus removal surgery, my life has gone on to "normal".....I did not have to go thru chemo. I was and am so blessed! My heart and prayers go out to Hannah and I ask all who read this to join my prayers for her healing and for insurance to cover her bone marrow surgery so that she will regain her young life.

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