Spencer Daily Reporter: Local News: Alex: 'I am screaming on the inside' (01/07/09)

(Photo submitted) Alexandria "Alex" Hermstad before.

This was written by the family of Alexandria "Alex" Hermstad, a teenage Storm Lake girl who has lost all movement of her body in an undiagnosed illness. How can you help? Cut 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)

(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: alexsarmy@hotmail.com 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 www.caringbridge.org/visit/angelsforalex for updates on her case. A video is also available online at http://www.youtube.com/watch?v=Lq6qotHli...

Please spread the word.

I am not sure if I can be of help, but I can try. My mother started losing feeling in different parts in her body after a car accident she had been in. Concerned she consulted a physician and she was diagnosed with Chiari malformation. It is a condition in which brain tissue protrudes into your spinal canal. It occurs when part of your skull is abnormally small or misshapen, pressing on your brain and forcing it downward. Chiari malformation is uncommon, but improved imaging tests have led to more frequent diagnoses. We had never heard of this until she was diagnosed with it. I hope this might help.

Thinking of you and your family,

Jennifer & Jeremy Carron

-- Posted by jenecarron on Wed, Jan 7, 2009, at 10:42 PM

I am very sorry this is happening to your family and we are praying for you. The community of Storm Lake should raise the funds for Alex to be seen at Mayo Clinic or Johns Hopkins. Also, if your family doctor won't advocate for you, find another one. The family doctor should be tireless in connecting you with experts around the nation and if yours won't step up, ditch him or her.

I'm not sure what to say about President Obama except I don't see this as something for a politician to do. Having said that, you should have your mom or dad CALL senator Harkin's office. He has always advocated for people who are ill and have disabilities and I KNOW he can help you.

I'm not a doctor but I am pretty sure you must have neuroacanthocytosis.

Try the National Institutes of Health if you haven't already. A doctor should be able to send your MRI's, bloodwork and other tests there and they will make some sense of them.

Office of Rare Diseases

National Institutes of Health, DHHS

6100 Executive Blvd., 3B01, MSC 7518

Bethesda, MD 20892-7518

http://rarediseases.info.nih.gov

Tel: 301-402-4336

-- Posted by lakewriter51301 on Thu, Jan 8, 2009, at 12:55 PM

I am very sorry to hear about your terrible illness. I am by no means a doctor, but I have always been extremely intrigued by the medical field.

When I saw your story I did a little research. It may be way off, but I came across this article on Amyotrophic Lateral Sclerosis, also known as Lou Gehrig's disease.

Amyotrophic lateral sclerosis (ALS) is a serious neurological disease that causes muscle weakness, disability and eventually death. ALS is often called Lou Gehrig's disease, after the famous baseball player who died of it in 1941.

Worldwide, ALS occurs in one to three people per 100,000. An inherited form of the disease occurs in 5 to 10 percent of the cases. But in the vast majority of cases, doctors don't yet know why ALS occurs in some people and not in others.

ALS often begins with muscle twitching and weakness in an arm or leg, or with slurring of speech. Eventually, ALS affects your ability to control the muscles needed to move, speak, eat and breathe

Symptoms

Early signs and symptoms of ALS include:

Difficulty lifting the front part of your foot and toes (footdrop)

Weakness in your leg, feet or ankles

Hand weakness or clumsiness

Slurring of speech or trouble swallowing

Muscle cramps and twitching in your arms, shoulders and tongue

The disease frequently begins in your hands, feet or limbs, and then spreads to other parts of your body. As the disease advances, your muscles become progressively weaker until they're paralyzed. It eventually affects chewing, swallowing, speaking and breathing

If you are interested in reading anymore on this subject you can go to mayoclinic.com. I wish you and your family the best of luck. I will continue to spread your story and do anything else I possibly can to raise awareness of your situation. You will be in my prayers.

-- Posted by mommy of 2 on Thu, Jan 8, 2009, at 10:06 PM