Bittersweet Day: Oct 23 One Year Anniversary of State of Texas Dysautonomia Awareness Day

Posted: October 21, 2013 in Dysautonomia, From the Momma Bear, Uncategorized
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From the Momma Bear:  We are still on cloud nine from all the excitement, generosity and outright great time for Boo Bash held this past Saturday to help us raise money to serve chronically ill teens in our community and across the nation.  As soon as Mik is recovered (energy crash… To Be Expected), we are working on the blog post to share with you all the details from the night and it will be posted soon.

Mik before the Homecoming Dance where she collapsed for the first time.

Mik before the Homecoming Dance where she collapsed for the first time.

I did want to take this moment to highlight a bittersweet day for us coming up on October 23.  This was the first day Mik ever collapsed.  The first day she ever showed symptoms of Dysautonomia.  She went from a regular teenager girl dancing at her first freshman year homecoming dance… to a teen who collapsed on the dance floor and was slumped over in a wheelchair leaving the dance.  Doctors had no idea initially what happened to Mik.  I never knew something like Dysautonomia existed.  Our eyes were opened…

This day is bittersweet because I would never ever wish Dysautonomia life on anybody… much less my daughter.  It was not just her life that changed that day… it was our entire family’s.  If I could personally suffer the daily pain and exhaustion she faces, I would do it in a minute.  I wished with all my might it was my very own burden to bear… not hers… and not her brother and sister’s.

This day is bittersweet because it opened my eyes and changed me permanently to become a better person.  Before our “dysautonomia world” I, like many of my good friends, did charity work through church and other organizations.  I liked to think if I heard of a need, I would figure out how to help.  Never did I hear or realize the plight of families who had teens living with debilitating chronic illness.  I heard about the sweet families who needed a fundraiser to help with expenses after an unexpected accident, the unfortunate diagnosis of cancer, etc… but never Dysautonomia (or the many other life-changing chronic illnesses).  Because of the longterm duration of the illness and because families have a tendency just to “circle their wagons” and do what they can to help their teens and survive financially, they were hidden…

This day is bittersweet because through Mik’s difficulties she ultimately had a vision to create Mik’s Hidden Hearts Alliance to help reach out to other teens like herself that were homebound.  Her vision was to help the teens in the children’s hospital and bring them teen friendly supplies (instead of having to use the baby shampoo, toothpaste, etc)  Through her inspiring vision, she has brought together some of the best friends, families and teens I could ever wish to meet.  Whether they are near or far, we are becoming one big MHHA family and I can not imagine our world without them.

At Mik’s Hidden Hearts Alliance, we pride ourselves on being a very welcoming (no cliques) positive, focus on HOPE outreach group for chronically ill teens and their families.  If you have been a little nervous to try one of our meetings or socials, I greatly encourage you to come.  If you did not know anyone when you came, you will have friends by the time you leave!  Check out our Events Calendar here. State of Texas Dysautonomia Awareness Day Oct 23, 2012 in honor of Mik

This upcoming Oct 23rd day is bittersweet because I am so proud that just one year ago, the State of Texas proclaimed it the “Dysautonomia Awareness Day” in honor of Mikaela “Mik” Aschoff.  Mik was surprised at last year’s Boo Bash for this honor and we greatly appreciate State Representative Bill Callegari and State Representative John Zerwas for the proclamation.  The City of Katy, our hometown, also recognized Oct 23 as the Mikaela Aschoff Dysautonomia Awareness Day signed by Mayor Don Elder, Jr.

October 23 Dysautonomia Awareness Day was created in Mik’s honor, but Mik will be the first one to tell you – it is in honor of all her fellow hidden teens.  They inspire our family to move forward with MHHA.  Every letter, phone call, Hope Kit recipient photos and more encourage us to move ahead and reach out to even more families.

Mik's little brother Kyle - a big part of the team work for MHHA. He is our "muscle" for the heavy lifting and always has us laughing during his many photobombing attempts!

Mik’s little brother Kyle – a big part of the team work for MHHA. He is our “muscle” for the heavy lifting and always has us laughing during his many photobombing attempts!

MHHA is an Aschoff family charity that could not be possible without the teamwork of her brother and sister, our amazing family, friends (who have stuck with us during this journey) and anonymous donor angels.  It takes all of us working together to make this happen.

The State of Texas resolution is pictured above.  Below is the wording for the City of Katy.  I am thankful for all of you who have turned this heartbreaking day of Oct 23, 2010 into a day filled with hope, love and friendship through MHHA.  

We are going to get through this together!  (And work with the wonderful Lamb Foundation for Dysautonomia Research to get working on that cure!)  And we appreciate EVERYTHING Dysautonomia International is doing to bring about awareness and advocacy.

Mik's little sister helping at a Dysautonomia Awareness event. She's always a big helper and loves helping to pack Hope Kits

Mik’s little sister helping at a Dysautonomia Awareness event. She’s always a big helper and loves helping to pack Hope Kits

Mikaela Aschoff Dysautonomia Awareness Day

Oct 23, 2012

Whereas:  Mikaela Aschoff has been the visionary and founder of Mik’s Hidden Hearts Alliance, a charity dedicated to helping teens with Dysautonomia and other hidden chronic illnesses; and

Whereas:  Mikaela Aschoff is leading the charge for Dysautonomia Awareness in our community and has set a determined goal to bring about awareness across the nation; and

Whereas:  Mikaela Aschoff has been a driving force to develop outreach programs for both homebound and hospitalized teens; and

Whereas:  Mikaela Aschoff has inspired and led donation drives in which hundreds of gift bags have been distributed to the local children’s hospital and Hope Kits sent to homebound teens, both locally and nationally.

Whereas:  Mikaela Aschoff, despite her own debilitating, unpredictable symptoms of Dysautonomia, is dedicated to showing other teens how to focus on what they can do and not on what their bodies limit them to do.  And, most importantly, TO NEVER GIVE UP! Now, Therefore, I, Don Elder Jr., Mayor, hereby recognize October 23, 2012 as Mikaela Aschoff Dysautonomia Awareness Day in the City of Katy, and encourage everyone to become better informed about this disorder and the persons whose lives it affects on a daily basis. Posted by  www.mikshiddenhearts.org.  Serving teens with dysautonomia and other hidden chronic illnesses.

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Comments
  1. Cyndi Miller says:

    As a Dysautonomia mom with a teen who has benefited from MHHA and the love given in this group I encourage everyone to support Dysautonomia National Awareness Day this October 23rd. We were diagnosed a year ago this month and without the love and support of this group I am not sure where my beautiful teenager would be. Support, contribute, and pray for all of these teens, especially for a cure so they may once again lead happy, productive lives. Keep your dreams alive always not matter which path God takes them down.

  2. Janet Bizjak says:

    Stay Strong Mik…..you are awesome! Thank you for bringing awareness to this. Unless you are living with Dysautonomia it is so hard to understand. I have had symptoms since I was 22. I am now 48 and completely disabled with it. There may be some new meds out there on the horizon. I hope you find some that work. If you would like take a look at my blog about my recent struggles living with this. GOOD LUCK and STAY STRONG!
    Janet
    http://agiftforwiltheporscheblog.blogspot.com/

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