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|An Inspiration Alexandria Hermstad - Oprah Community Letter|
|Written by Canuck|
|04 March 2009|
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 9 months and being in 3 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 morefrustrating 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.
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/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. 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 5 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, does 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.
In January, I asked over 500 newspapers to print this letter, but only a handful printed it because it was "too long". I asked them to come together for just one day to do something that was completely unprecedented; publish the same letter across the country so that all may hear my plea and give me help and hope.
A simple random act of kindness that was ignored simply because it took up too much space or because an advertisement couldn't get printed. A simple random act of kindness that 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, 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.
Last summer, my family began "Alex's Army". Will you join Alex's Army? 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.
With God, all things are possible. Matthew 19: 24-26
"Once you choose hope, anything's possible" -Christopher Reeve
Hope is a word that every heart understands.
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