Friday, January 9, 2009

Alex . . . a young girl with a mystery diagnosis

Cross-posting this information incase there is anybody who can help this girl. Feel free to pass a long to anyone you may know!


From the Spencer Daily Reporter


Alexandria “Alex” Hermstad before.

This was written by the family of Alexandria “Alex” Hermstad, a teenage Storm Lake, Iowa girl who has lost all movement of her body in an undiagnosed illness. How can you help? Print it out, send it to a doctor, a hospital, a university medical school, a media company, the White House. The Hermstad family is praying that somehow, somewhere the story will reach someone who may have an answer. The story is written from Alex’s viewpoint.

Hi, my name is Alexandria Hermstad, but everyone calls me Alex. I have an identical twin sister named Jaci and we are 15 years old. I was always healthy but for almost four years now, I have been fighting an illness that nobody seems to know what it is or why it is happening to me. I live in Storm Lake, Iowa and I am paralyzed. I have to use a ventilator to breathe through a hole in my throat which sometimes gets plugged and I can’t breathe. I cannot swallow food anymore so my diet consists of liquids through a tube in my stomach. My mind still works fine and I understand everything that is going on around me. I can’t speak either, so my mom is helping me to put my feelings on paper.

Jaci and I used to love playing sports, riding horses and snowmobiling. When I turned 11, I began having trouble moving my left arm. By the end of the year, I could no longer walk. We were told to leave our house because the cause might be environmental. So we left. We left everything! Our dog, Gracie, couldn’t even come with us. After nine months and being in three different hospitals, I finally went home.

Since my illness began, we have met so many caring people. We are very grateful for all those who have reached out and shared whatever they could give. I am very thankful for those who have tried to help me. But at the end of each day, I am still here.

Many times I want to scream, but I have no voice.

Many times I want to hide away in my room, but I cannot move.

I want to hug my family and tell them I love them, but I can’t.

I can still move a little corner of my mouth to answer “yes” questions.

I can still cry and tears can still roll down my face, but I cannot wipe them away.

It takes a long time to be able to communicate with my parents. Many times it’s very frustrating to get my thoughts across and then for someone to understand me. What is more frustrating is why do the doctors and researchers we have written to and who have the capability to help me, choose not to help me — like I don’t exist?

I want to do so much but because I am trapped inside my body, I can’t.

(Photo submitted) Alex and her mother, left, sharing a moment now.

I have been ignored by almost everyone who has the power and knowledge to help me. I used to watch medical mystery shows and was always overwhelmed in seeing how a doctor on the show would come forward and do a little extra to save or help their patient. I don’t know why someone won’t do that for me? What I do know is that my illness is “atypical” and not the obvious, which seems to be why doctors are so perplexed. But I can’t get their attention to care enough to help me. I just need someone to care. Even Make-A-Wish denied my wish. St. Jude’s never even tried to help me. President-elect Obama met me in my home, took his picture with me and promised to help me, yet I still wait. My own governor looks the other way. Nearly every national foundation and organization my family writes to responds back saying I don’t meet “criteria”. Every major news organization we write to ignores me. They must not believe five minutes is worthy of helping to save my life. Has our society come to the point that celebrities become a higher priority than rescuing a child with an extremely rare condition?

Celebrities, foundations, politicians, physicians, hospitals, and the list goes on, do not find it in their hearts to get back to me. Why? What would you do for your loved one? All I want is someone with the power and knowledge to help me. I have been rejected because I don’t meet criteria. How sick do I have to get to meet “criteria”?

Recently, a local charity has offered me and my family support by trying to help bring about awareness to my story in hopes it will save my life before it is too late. I am fighting so hard to survive, and even though my voice is silent, I AM SCREAMING ON THE INSIDE TO BE HEARD! PLEASE help me! So many people have told me they love me and they can show this by contacting everyone they know about me so my voice can be heard. There is strength in numbers. Something as simple as taking a few minutes to send a message to all the people in your mailbox could make a big difference.

I am also writing big newspapers. I am asking that all newspapers come together for one day to do something that is completely unprecedented: Publish the same letter across the country so that all may hear my plea … a fresh start to the new year.

It may only take a few minutes, but sharing my letter with someone, a simple random act of kindness, may very well save my life. Please prayerfully hope that I can celebrate another birthday… another Christmas…the day I prayed I would get to graduate from high school.

But even more, a miracle to share in God’s glory.

I am respectfully and passionately asking people who have the power to move — to move for me.

I am asking those who have the ability to scream, to scream for me.

I am asking those who have the capacity to talk, to be my voice.

Everybody tells me to “keep fighting Alex”, so I do. I fight relentlessly … each hour of every day.

Now, I am asking people to fight with me AND for me.

I don’t know why doctors won’t help me … will you?

Last summer, my family began “Alex’s Army”. Will you join Alex’s Army and help me by contacting my e-mail at: with suggestions and your ideas on how you can help me? Hopefully, and prayerfully, I can find someone who will be willing to help me.

Those who pray, please pray for me as my faith in God has helped sustain me in this battle.

Thank you and God bless.

Alex Hermstad

Editor’s note: See Alex’s Caring Bridge site at for updates on her case. A video is also available online at (inserted below on this site)

Please spread the word.

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