Posts Tagged ‘Dysautonomia Awareness’

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Me and my felllow hidden teens: Michael & Natalia

The second annual Mik’s Hidden Hearts Alliance Anti-Prom for our hidden teens and young adults was a huge success!  

I am still in a bubble of happiness about it (with a little bit of sadness that it’s over…). My devoted family and friends worked so hard for months to pull everything together for this event and it definitely showed. Without them, the Anti-Prom wouldn’t even be possible. I thank you all so much and I love you all. Ya’ll are my heroes.

This year, we held the event at the lovely Maggiano’s Italian restaurant in the Houston Galleria area. The always amazing Mike Eichenberger was our emcee and our night consisted of dining on a delicious dinner prepared by the restaurant, casino games, TONS of prizes and a photo booth from Jonny Black Productions (which was such a fun addition this year!).

 

Swag Bags!  Sponsored by The Abbott Family, The Allen Family and The Toman Family

Swag Bags! Sponsored by The Abbott Family, The Allen Family and The Toman Family

SWAG BAGS:  Each guest went home with a swag bag made possible by the Abbott Family, Allen Family and Toman Family.  Each one was complete with a new edition MHHA t-shirt, MHHA coffee cup, wrist band, candy, drinks provided by Hoist, and more.

 

1265237_10104429087554910_6297330772429939780_oPRIZE  BASKETS:  We also gave away numerous big prize baskets that were completely awesome (if you ask me) with the top 3 prizes included:  a Texan’s themed basket which contained four tickets to their next game (donated through the Katy Classical Academy donation drive/ Johnson Family), 24 inch Flat Screen TV / Blu-ray dvd from the employees at Enterprise Bank Pin Oak location, and Beats headphones/gift cards basket from Enterprise Bank employees at Pin Oak location..

Perhaps one of the biggest highlights of the night was that three news stations came up and did a report on the prom. It was quite a surprise to me and I was both excited and nervous when I was interviewed, but I was pretty pumped that we were going to have word get out to those watching of what Dysautonomia is and what Anti-Prom\MHHA is all about. Much thanks to ABC 13 News, Fox 26, and Univision for covering the event.  I would also like to thank my fellow hidden teen, Natalia Rijos, for speaking Spanish on our behalf for the Univision interview – you are a wonderful spokesperson!  1973369_10104429049466240_4588128782616635838_o

I also want to thank my Anti-Prom committee which includes my co-chairs Lori Allen, my Aunt Ronda, and my mom. Thank you all so much for the hours of work you put into this event and for running with my crazy, over-the-top ideas and making them possible. Lori created the beautiful Anti-PROM masquerade decor, coordinated many details with Maggiano’s and so much more to list. She is so absolutely talented and she ran with the vision I had for the prom and it came out beautiful (You rock Lori!!).

My Aunt Ronda took off a whole week of work just so she could focus on putting together all of the door prizes, prize baskets, and swag bags (as well as running all over town collecting donations). Much appreciation to her team of volunteers across town for literally dropping everything to help her put together all the gorgeous prize baskets and door prizes!!  My grandmother, aka Nana, also helped tremendously with this and I thank you both for both being some of my biggest advocates and for everything you have done for me, this event, and MHHA.

I also want to thank my mom so incredibly much for everything. For staying up late hours creating designs, coordinating, and spreading the word. For running around on the brink of insanity to make sure everything is pulled together – for always being a great mentor, and for being an amazing mom to me and to my two siblings in the middle of it all.

10003634_10104429050923320_6918126023045552876_oFor all of our donation coordinators who went above and beyond by reaching out to their favorite businesses, coworkers, families and friends to gather so many donations that left our hidden guests in awe of the too many to count prize baskets and door prizes.  (Big big big thank you to Lesha Daniel for always quietly working her magic and sharing our story and her daughter’s dysautonomia story so effectively and heartfelt that our community just embraces us to help do their part.  And to Kimberly Smith for working her magic with her coworkers… what generous supporters!)

The Anti-Prom was a magical night and was all the more special to me with this being my senior year. To see the smiles and joy on my fellow hidden teens and young adult mentors faces, was a privilege and I am so honored to be among so many inspiring people.  It is a memory I will always cherish and I look forward to giving other hidden teens this special night for many more years to come.10259926_10203889823911229_3628666037562009240_n

Big thank you to Brett Perroux Photography and Tiffany Daniel Photography for capturing our event beautifully!  See below for their link for the photos.

To see the news reports about our Anti-PROM, click below:

Fox 26 News: Mik’s Hidden Hearts Alliance Anti-PROM

ABC 13 News:  Mik’s Hidden Hearts Alliance Anti-PROM


MHHA Anti-PROM could not be possible without our generous volunteers, donors and sponsors. 

(This list is continuously being updated as we receive the Anti-PROM wrap up details from our volunteers.  Please send your updates to:  info@mikshiddenhearts.org.  We want to make sure all of our generous supporters are recognized!)


1978809_10203877963894736_8939445103350707827_n-Our volunteers who helped set up, deal, supervise, and so much more!  

BIG thank you to our neighbors, The Pinel Family (for everything!!) and our other sweet neighbors (we are so blessed!) Kelly & Rodney who saw a moving van, knew we had Anti-PROM coming up and generously (and blindly!) offered to help move/setup whatever we needed (and boy did we need their help!)

  • Our entire Anti-PROM volunteer team!
  • Maggiano’s Restaurant (and especially event coordinator Allison!)
  • Mike Eichenberger – Emcee
  • ABC 13 News
  • Fox News
  • Univision
  • Katy Classical Academy (for the prize donation drive and selecting MHHA for their Charity of the Month)
  • Pruning Hook’s Ministry for donating dozens of beautiful prom dresses to our hidden teen girls
  • Brett Perroux Photography and Tiffany Daniel Photography – for once again capturing our event beautifully!  Thank you!!
  • Jonny Black Productions for the fun photo booth

 

Thank you Donors!:

  • The Abbott Family
  • The Allen Family
  • The Andrews Family
  • The Bowen Family
  • The Butler Family
  • The Canseco Family
  • The Dudley Family / Lia Sophia Rep Stephanie Dudley
  • The Girgenti Family
  • The Heard Family
  • Patty Hermann
  • The Jinks Family
  • The Johnson Family
  • The Lamb Family / Lamb Foundation for Dysautonomia Research
  • The Leavitt Family
  • The Lee Family
  • The Lyons Family
  • The McWhorter Family
  • The Morello Family
  • The Northcutt Family
  • The Pinel Family
  • The Schwartz Family
  • The Smith Family
  • The Smithers Family
  • The Stilwell Family
  • The Svatek Family
  • The Thorpe Family
  • The Toman Family
  • The Wright Family
  • Blackjack Casino Company (without you, there would be no casino night!)
  • Brookshire Brothers
  • Dr. Catherine Wilder, Smile Design
  • Enterprise Bank Pin Oak Location in Katy
  • Fox Pizza
  • Girl Scout Troop 7109:  Clear Lake / Seabrook
  • Global Kids Project
  • Gringo’s Mexican Restaurant
  • Hoist
  • James Avery Jewelry – Katy location (Cyndi Miller coordinator)
  • Katy ISD Maintenance Dept Coworkers (Kimberly Smith coordinator)
  • Keep Kids Connected
  • Melaney Gibbs-Tarantino
  • Mickie C and Company Realty
  • Midway BBQ
  • Origami Owl – Stephanie Parrish
  • Pilates Powerhouse
  • Sandi Hall – Medical Massage Therapist
  • The Santikos Palladium
  • Tim & Staci Domino – Bath & Body Works gift cards
  • Visible Changes, Inc

MHHA Event Photography:  Guests, volunteers and donors have the rights to use our photos.  If you want to use them for any type of publicity purposes, permission in writing must be granted from us.  Email us at:   info@mikshiddenhearts.org

Tiffany Daniel Photography Anti-PROM Pictures (code to download 4574)

Brett Perroux Photography Anti-PROM Pictures:  Pics below.

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Mik’s Hidden Hearts Alliance is dedicated to bringing positive encouragement and hope to homebound and hospitalized teens who suffer from Dysautonomia and other life-changing chronic illnesses through social outreach, Hope Kits, Hospital Teen Program and Dysautonomia Awareness.  #dysautonomia #chronicillness #Hope4DysTeens #TheHidden Dysautonomia Teens

Please help spread awareness!  Like our Facebook and Twitter pages.

 Learn how you can help MHHA here.

We appreciate all of our angelic sponsors.  With every big or small donation, we are able to help more Hidden Teens.  Special thank you to our Gold Heart Sponsors at Lamb Foundation for Dysautonomia ResearchSpero Rehab and J Knesek & Assoc.

October 23rd is officially the Texas Dysautonomia Awareness Day in honor of Mik’s Hidden Hearts Alliance founder, teenager Mikaela “Mik” Aschoff.  Or, as Mik likes to say – in honor of all her fellow dys friends : )

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Texas Dysautonomia Awareness Day Proclamation signed on Oct 23, 2012!

October 23 (2010) is also the anniversary for the first time Mik collapsed on the dance floor at her 9th grade high school homecoming dance.  So to make this negative day positive, MHHA requested the State of Texas declare this life changing day into Dysautonomia Awareness Day!

We encourage this to move forward to other states!  Join the MHHA challenge and read more about how to get proclamations in your area through Dysautonomia International.

And as always, we are very proud partners with the Lamb Foundation for Dysautonomia Research who work with Mik’s great team of doctors at the Dysautonomia Clinic for Excellence at the Children’s Memorial Hermann / UTHSC Physicians in Houston, Tx.  

Posted by www.mikshiddenhearts.org.

We serve teens with Dysautonomia and other hidden life-changing chronic illnesses.

Know of a deserving “hidden” homebound or hospitalized teen?  Nominate them for a Hope Kit filled with teen inspired gifts!  Go to our website at www.mikshiddenhearts.org for more details.

 

ImageAnother BIG shipment of Hope Kits are going out. We had so many requests and Mik wanted them to reach the surprise recipients before the extra busy Boo Bash time. We are working hard to keep up with the demand. 

We have all our volunteers working hard on Boo Bash, so Mik did this set slowly but surely on her own. So extra Mik attention was given to each kit.

Can’t wait for them to be received!

Know of a deserving chronically ill homebound or hospitalized teen?  Nominate them for a Hope Kit!  Click here!

#Hope4DysTeens

One of the biggest honors I get to receive is meeting fellow “hidden” dysautonomia teens who not only inspire me, but understand what I am going through on a daily basis.

Today, I am featuring one of my newest treasured friends, Rebecca W as our current featured blogger.  Love her honest responses… especially #26.  Thanks Rebecca!

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Rebecca at MHHA First Annual Anti Prom for Chronically Ill Teens

1. The illness I live with is: POTS (Dysautonomia subtype – Postural Orthostatic Tachycardia Syndrome)

2. I was diagnosed with it: February 2013

3. I first noticed my symptoms when: My legs crumbled after I was sitting and my arms and legs went numb.

4. The biggest adjustment I’ve had to make is:  Not being able to dance everyday.

5. Most people assume: That I am perfectly normal.

6. The hardest part about “not so good” days are: I want to get up and be active but I physically can’t.

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Life before Dysautonomia

7. Prior to me getting sick, I liked to: Do ballet, hang out with friends, be a normal teenager.

8. A gadget I couldn’t live without is:  My android phone

9. The hardest parts about the nights are: Not knowing how you might be the next day.

10. Each day I take approximately 8 pills & vitamins.

11. Regarding alternative treatments I include: physical therapy (aquatic), drinking plenty of fluids (10 glasses of water a day), getting lots of sleep, not getting cold, don’t overdue anything

12. If I had to choose between an invisible illness or visible illness I would choose: Invisible because people will treat you normally.

13. Regarding school, I am homebound/homeschooled/attend at school and I find this: I am half homebound and half at school and I find it hard to not be around my friends all day but I know I can’t physically  handle more.

14. People would be surprised to know: I used to dance 18 hours a week.

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Rebecca at Mik’s Hidden Hearts Teen Social Class: Cake decorating

15. The hardest thing to accept about my new reality has been: I have to change my goals and dreams.

16. Something I never thought I could do with my illness that I did was: Take a two hour Travis Wall class, go to school for half days, choreograph an entire dance for a show

17. I feel that the general awareness about my condition is: Nonexistent. I have to explain it to everyone even doctors. The first thing a specialist said to me when he walked in was “I know nothing about dysautonomia”. And he was an ‘expert’. (He may have been trying to joke around but his humor did not amuse me).

18. Something I really miss doing since I became ill is: Going to ballet everyday, going to school

19. It was really hard to have to give up: ballet

20. A new hobby / goal I have taken up since my diagnosis is: choreography

21. If I could have one day of feeling normal again I would: Dance all day

22. My illness has taught me: Be thankful for the good days

23. Want to know a secret? One thing people say that gets under my skin is: I can’t do it

24. But I love it when people: Give me hugs and say that I inspire them and I’m the strongest person they know.

25. My favorite motto, scripture, quote that gets me through tough times is: “The most beautiful people are the ones who went through the toughest situations in life but still somehow manage to keep a smile on their face, especially if they have a bright personality to go along with that smile” 🙂

26. When someone is diagnosed I’d like to tell them: Don’t give up. Ever. Surround yourself with people who love you because to be honest I’ve never felt more loved than I do now. There will be times when you feel completely alone but you never are.

27. Something that has surprised me about living with an illness is: You become more determined than ever to do pursue what makes you happy.

28. The nicest thing someone did for me when I wasn’t feeling well was: Carry me to bed and lay me down and just held me for hours until I started to feel better.

29. The person(s) who has been there for me and I could not do without is: Mom, Dad, David, friends

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Rebecca center: After diagnosis, instead of dancing using her talents to choreograph.

30. The fact that you read this list makes me feel: Like I’m important and someone cares what I’m going through.

Posted by Mikaela Aschoff with Mik’s Hidden Hearts Alliance.

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

ImageA big thank you to Katy Times and very kind and professional staff writer Taryn Sanderson for her article featuring my story and charity Mik’s Hidden Hearts Alliance  which will help spread dysautonomia awareness and help us to reach other chronically ill teens.  

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The music echoed through the Seven Lakes High School cafeteria when a student suddenly collapsed.

Freshman Mikaela Aschoff, now 17, was reliving her first and last homecoming dance.

“It was so quick when it happened; I didn’t fully understand what was going on,” Aschoff said. “I was very disoriented and I couldn’t move my legs.”

About a week later, Mikaela was diagnosed at Memorial Herman Children’s Hospital with Dysautonomia, a unique illness that targets the autonomic nervous system.

Mikaela was experiencing what she now calls an “episode” that night at the dance. It is common for Mikaela’s legs to go into a temporary paralysis state with her condition.

“In the week leading up to my diagnosis, I was also experiencing intense chest pains,” Aschoff said. “I could barely walk and every time I would sit up, I would just fall right to the floor.”

Before, Mikaela was a perfectly healthy teenager; she had no record of any medical issues in the past. That’s why her diagnosis was a shock to her and her family.

“It was like I was in a dream and I wanted to wake up from this nightmare because I was terrified of hospitals,” Aschoff admitted.

To Read More Click Here:  http://katytimes.com/news/article_818f870c-ce03-11e2-a2c7-0019bb2963f4.html

A big thank you to MHHA volunteer Antoinette Boulet for putting this Dysautonomia Awareness video together about our founder Mikaela Aschoff’s journey, the creation of MHHA and, most importantly, helping other teens with Dysautonomia.

Also, we at Mik’s Hidden Hearts Alliance GREATLY appreciate the work and dedication of the amazing team at UT Physicians: Dr. Numan (cardiologist) and Dr. Butler (neurologist) and their wonderful staff for all they do for teens with dysautonomia and their families. To say they care and give a voice to the hidden is an understatement!  A big thank you too goes to Children’s Memorial Hermann Hospital for the outstanding care they give.

 

Mik’s Hidden Hearts Alliance for Teens with Dysautonomia will have a booth at this year’s Katy Rice Harvest Festival to be held in Katy, Tx.  Over 45,000 people each year visit this popular family event.

We thank the Katy Chamber of Commerce for supporting Mik’s Hidden Hearts Alliance and helping us to bring Dysautonomia Awareness to our community.

Visit us in booth 507!