Posts Tagged ‘awareness’

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.

Boo Bash Flyer copy

We are so excited about the FUN planned for our second annual Boo Bash event!  A couple of answers to FAQ are below.  Please read!

1.  A few tickets are still available.  Please purchase asap through www.mikshiddenhearts.org

2.  Boo Bash has a A LOT of fun entertainment planned.  Make sure to check in promptly at 6:00 so you do not miss on a minute of fun!

3.  Special entertainment planned includes:  musical guests:  Rhonda William and Smokestack Sons.  Casino night with some amazing prizes.  Silent and Live Auction and more!

Thank you for coming and helping us to serve homebound and hospitalized chronically ill teens all over the country!

And a big thank you to all of our sponsors!  Including:

Gold Sponsors:  JKnesek & Associates, Spero Rehab and Ronda McWhorter.

JKnesek & Associates, Spero Rehab and Ronda McWhorter

JKnesek & Associates, Spero Rehab and Ronda McWhorter

Silver Sponsors:  Lamb Foundation for Dysautonomia Research, Towers Watson, Heston Law Firm, Texas Land Professionals, The Cox Family, The Kotecki Family, Commissioner Andy Meyers and Creating Memories Cakes.

Bronze Sponsors:  Dr. Ian Butler, The Marlowe Family, Mason Rd Sheet Metal, The Webb Family, Schaumburg & Polk, Inc., The Toman Family and The McWhorter Family.

(From the Momma Bear):  Just had to share this…  Thank you Maria and Rebecca for the uplifting words we received tonight.  Trust me, we receive so much more than we give.  I wish all of us were not on a Dysautonomia journey, but finding the silver lining, so thankful for our amazing MHHA families that walk the path with us.  And it never fails to amaze me how giving our families are (knowing we are trying to raise funds to help other teens).  Thank you from the bottom of my heart M&R for Blessing Up others!

ImageDear Mikaela and Keri,

 

We wanted to let you know how grateful Rebecca  and I are that we found out about MHHA. The first time I went to your site you had just had a social meeting at a movie theatre. I vividly remember thinking, “How on earth can they sit for that long?!” Rebecca had just been diagnosed and had debilitating symptoms, we were still praying for good hours to turn into good days.

 A few weeks later, we were preparing to attend our first MHHA meeting in Katy. Just before leaving Rebecca’s legs gave way, and she was lying at the top of the stairs, her body shaking. I had been anticipating this meeting for weeks, and we were going! It took a while to get Rebecca into the car, and we were a little late, but we made it.

 For the first time I was able to speak with two other parents who had a child dealing with very similar symptoms. It was beyond reassuring to know that seizures, body tremors, slurred speech, brain fog, etc were “normal”.

 Rebecca will always remember being able to go and choose a dress for the Prom. But also getting a chance to talk about her symptoms after kindly being asked, “How are you feeling Rebecca?” That day she got reassurance from fellow teenagers that they also are experiencing the same and similar symptoms. On the way home in the car, she said,”That was better than ten doctor’s appointments!” and I totally agreed.

I hope you know how much we have treasured meeting you both and how blessed we feel that our roads crossed. You have been our inspiration and support when we have needed it most. We have put together two Christmas-themed baskets, with items donated with the help of family friends, as a small token of our appreciation. And Houston Repertoire Ballet, where Rebecca danced (just taking a temporary break!! 🙂 have donated 4 tickets to their Nutcracker in Tomball.

 

Sending our best wishes,

Maria and Rebecca 

 

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#BlessUpDysautonomia – In honor of Dysautonomia Awareness month, we challenge everyone: hidden teens, their families, our entire communities to do small and big random acts of kindness towards people in our community who are homebound due to illness.

Think about that neighbor you have not seen in awhile or that person who was on your prayer list at church you have not seen. Seek them out, Bless Up and do little “angel drive byes”. These acts towards homebound people of all ages is appreciated more than you could ever know. Be the hope and light for others…

http://www.MiksHiddenHearts.org

Thank you to the Rehg family for allowing us to share this touching post. Navigating the path of a debilitating chronic illness being an adult is incredibly hard. Having to watch your teen go through it and live with daily pain… heart wrenching. The Rehg family have been a tremendous source of information and inspiration. Hugs to you all.
 
In Lorri’s words (Mom to daughter Sam):  In honor of today being the start of Dysautonomia Awareness month, I wanted to repost a post from Sam that I somehow posted with limited access the first time! As many of you know, we’ve been on this Dysautonomia (and Ehlers Danlos) journey for almost 5 years now, and it’s been a long and difficult road. We continue to redefine a “new normal” every day, while having hope and faith that one day we will all find a way to beat this. It’s a difficult path, and it often feels so isolating.
 
We are so grateful for all the love and support from our family, friends and Sam’s extended team of docs and caregivers as we find our way through all of this. We pray that one day this will all be behind us, and all the families whose lives have been impacted by the losses experienced with chronic illness as well. It takes alot of courage and strength to face all of the challenges that a chronic, hidden illness brings, and to open up and share that with others.
 
Photo: In honor of today being the start of Dysautonomia Awareness month, I wanted to repost a post from Sam that I somehow posted with limited access the first time!  As many of you know, we've been on this Dysautonomia (and Ehlers Danlos) journey for almost 5 years now, and it's been a long and difficult road. We continue to redefine a "new normal" every day, while having hope and faith that one day we will all find a way to beat this. It's a difficult path, and it often feels so isolating. We are so grateful for all the love and support from our family, friends and Sam's extended team of docs and caregivers as we find our way through all of this. We pray that one day this will all be behind us, and all the families whose lives have been impacted by the losses experienced with chronic illness as well. It takes alot of courage and strength to face all of the challenges that a chronic, hidden illness brings, and to open up and share that with others.  A couple of weeks ago, Sam was brave enough to share a glimpse into her heart, and into the "inner world" of life with chronic illness.......From Sam:  "I know it's hard to believe that you can actually miss school... But when your stuck at home only being able to do very few things every month. And when you do, being knocked out for weeks. You come to REALLY miss friends, homecoming, school, and everything that comes with it. High school is supposed to be fun and all kinds of new experiences . But instead for me it's filled with doctors and all kinds of new symptoms. I may look normal and try to hide my pain but, in the inside its always there and it never goes away.You never know how good you have got it, until it's gone."A couple of weeks ago, Sam was brave enough to share a glimpse into her heart, and into the “inner world” of life with chronic illness…….From Sam: “I know it’s hard to believe that you can actually miss school… But when your stuck at home only being able to do very few things every month. And when you do, being knocked out for weeks. You come to REALLY miss friends, homecoming, school, and everything that comes with it. High school is supposed to be fun and all kinds of new experiences . But instead for me it’s filled with doctors and all kinds of new symptoms. I may look normal and try to hide my pain but, in the inside its always there and it never goes away.You never know how good you have got it, until it’s gone.”

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www.MiksHiddenHearts.org

Back by Popular Demand!  Dysautonomia: Awareness and Advancement Seminar is coming to Houston!

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We at Mik’s Hidden Hearts Alliance are excited to announce, with permission from Dysautonomia Center for Excellence in Houston and TIRR Memorial Hermann, the upcoming Dysautonomia Awareness and Advancement Seminar!

To be held in September (We will update you on exact date/time as soon as we know).  Call TIRR, number below, to get on the waiting list.  The first seminar was full several weeks before the seminar.  

(Update 7/29/13 from MHHA friend:  I called this morning and I was told that it might be on September 28, Saturday. She said committee is trying to make sure that the doctors can come on same day. She placed me on the RSVP list and I was already #31. So hurry up and call to sign up.)

TIRR Memorial Hermann Outpatient Rehabilitation at the Kirby Glen

2455 S Braeswood

Houston, Tx  77030

Agenda (from first seminar):

10:00 – Welcome

10:05 – Medical overview (Dr. Ian Butler and Dr,. Mohammed Numan)

11:00 – Benefits of physical rehabilitation (Dr. Glendaliz Bosques)

11:30 – Cognition, memory and return to school

12:15 – Light lunch

1:00 – Community and social support systems

1:45 – The importance of therapy including aquatics

2:45 – Questions and answers

3:00 – Conclusion

Please RSVP – 713.383.5659

We who fight dysautonomia on a daily basis can all agree this seminar will be better than any summer blockbuster movie!  We are looking forward to it here at MHHA and hope to see you there!

For more Mik’s Hidden Hearts Alliance updates, check our website at:  www.mikshiddenhearts.org or our Facebook page here.

We help teens and their families who have Dysautonomia and other life changing hidden illnesses.

Dysautonomia Awareness – Support Group – Socials – Hope Kits