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My daughter and Mik’s Hidden Hearts Alliance founder on #NBC #KPRC Channel 2 news, interviewed by Keith Garvin about her #Dysautonomia story and future therapy with #Celltex.

Please watch and share!

http://www.click2houston.com/news/fort-bend-county-woman-looks-to-community-she-often-helped-for-help

#Dysautonomia. #ChronicIllness #Stemcells

20140301-111316.jpgWords from Mik this evening reflecting not just on the scary episode and subsequent ER trip today (she’s going to be okay, but has another concussion and cervical sprain), but life with dysautonomia, too:

Dysautonomia is a pain – I call it a curse. Though patients get used to it, it never gets any easier.

If you think fainting (which is just one of many problems this illness can bring) is no big deal then I got news for you. The actual act of fainting doesn’t harm you – it’s what happens afterwards.

It can be extremely dangerous depending on where you are and what you hit. I once had a “friend” tell me along the lines of “Whats the big deal? You just pass out.” She didn’t realize it, but that devastated me. I thought she understood me to an extent. To have someone write off a huge struggle you have to deal with as if it’s nothing really bites.

0430160814a.jpgThis is just part of what makes me so passionate about others like me and the Hidden Hearts Alliance. I hope that with the awareness we bring people will become educated and those who once didn’t understand will approach the way they see chronic illnesses differently. And I work to have those who do suffer with these chronic illnesses have a safe haven to go to where there’s others like them who understand and they’re not alone.

So I thank all of you who have supported the charity and to those of you who have been great friends, supporters, and caregivers to someone who is a hidden heart. Y’all are absolutely amazing.

#Dysautonomia #Hope4TheHidden

http://www.MiksHiddenHearts.org

Serving teens and young adults who have #Dysautonomia and other life-changing #ChronicIllnesses

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It is time… NO MORE dysautonomia causing hard falls like she did today.  NO MORE.  I can not bear to think one day she could not wake up from one of those fainting episodes that cause one too many concussions.

Please help share this link
https://www.gofundme.com/25knwyzw
so we can try to get Mikaela Aschoff the treatment she greatly needs that insurance does not cover. 

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So many of you have so generously helped with our other actual charity goals and because this personally and directly affects Mikaela (not the charity) we do not want to bother you for more.  But if each one of my friends could share this link, with writing a personal message, you could easily generate countless dollars to make this happen.

****If you have a business that you would like to donate a percentage of your sales OR a fundraiser idea that you can lead, PLEASE contact me.  The sooner we make this happen the better.

Thank you my friends, for helping and sharing.  Isaiah 40:31

#TeamMiracleForMikaela  #Dysautonomia  #MiksHiddenHearts

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You’re invited to attend the movie social this Sunday!

What:  The Huntsman Winter’s War

When:  Sunday May 22 at 4:15 (meet in the lobby at 4:15. Movie starts at 4:50)

For:  Hidden teens & young adults, their caregivers and our volunteers

Cost:  free for our hidden teens and young adults. (everyone else kindly purchase your ticket separately.)

Where:  Cinemark at Memorial City Mall
310 Memorial City Way
Houston, Tx 77024

RSVP to save your seat!

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Today, Mik and I attended the Dysautonomia Seminar hosted by the Dysautonomia Center of Excellence / UT Physicians / Children’s Memorial Hospital.  The entire seminar was wonderful and very interesting to this Dysautonomia mom research nerd.

The fabulous Dr. Numan and Dr. Butler spoke along with guest speaker (awesome!) Dr. Chelimisky. Big props go to the best Dysautonomia Research nurse, Rebecca Martinez, for all her hard work in coordinating the seminar!

I was so blessed to talk to so many of our MHHA families at today’s Dysautonomia Seminar in Houston (reached max capacity of 300!)

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As I looked across the room, I saw parents of all ages, living in different areas, different cultural backgrounds with the SAME unconditional loving determination to understand their teen/young adult’s Dysautonomia life AND get them the help they need.

We are all family by fire.

#Dysautonomia. http://www.MiksHiddenHearts.org

Big thank you to Lamb Foundation and Dysautonomia International for co-sponsoring this event!

Mik’s Hidden Hearts Alliance serving teens and young adults with #Dysautonomia and other life-changing chronic illnesses.

full-capacity-webAnti-PROM registration is closed as we are at full capacity.  Can not wait to see everyone who registered there!

Have donations?  We still need more prize baskets to be given to all our chronically-ill youth in attendance.  Please message us to coordinate the pickup of your donation:  info@mikshiddenhearts.org

 

 

Calling ALL registered Anti-PROM ladies (the hidden – chronically ill youth, their guest and our volunteers!) Come join us THIS Saturday for our annual Dress Shopping Day sponsored by Pruning Hooks Ministry.

Prom dress shopping day is THIS SATURDAY for all of our REGISTERED Anti-PROM ladies and their guests.

Please note you must be registered to attend our Anti-PROM via online www.MiksHiddenHearts.org to get your free dress.  Anti-PROM is for teens and young adults with Dysautonomia and other life-changing chronic illnesses.

When: Saturday, March 19

Time: 2:00 – 5:00

Where: St. Peter’s United Methodist Church 20775 Kingsland Blvd, Katy, TX 77450 (In Asbury Hall)

Big thank you to St. Peter’s for donating their space, Cherri Northcutt for coordinating the room and Pruning Hooks Ministry for their annual prom dress drive benefiting our organization.

 

#Dysautonomia #ChronicIllness #Prom  Mik’s Hidden Hearts Alliance

MHHA Prom Flyer 2016