07/23/2019
Hello our MHHA Friends,
Many of you are asking for Mikaela "Mik" Aschoff health updates. As many of you know, Mik has been part of the research team with Dr. Numan and Dr. Butler since she first got ill in 2010. She has done a variety of research study treatments, some very painful with many side effects, to help ease the burden of Dysautonomia and hopefully to help give the doctors more information to help find treatments for other sufferers.
Some of the treatments would help one of the dysautonomia symptoms, but the side effects were brutal for her. In her case, as well as the handful of other brave teenagers who went through the same treatments, she did more treatments than the average dysautonomia patient today in the name of research.
Her doctors have always been amazing and open-minded to a variety of treatments out there. With their blessing, and running out of treatment options to help her mostly homebound life, she pursued stem cell therapy through Celltex.
For Mik, this has been life-changing and we as a family have been very careful on what to recommend/not recommend for people because every patient is different. In Mik's case, the stem cells have been the only treatment to date that has had these phenomenal positive changes for her. Celltex Therapeutics have been our answered prayer for many tear-filled prayers over these difficult years.
As her mom helping and guiding her through these painful debilitating years that ROBBED her of her youth (I'm still a little bitter about that one... I can't lie about that!), my only hope was that one day she would be well enough to live a semi-independent life with as little pain as possible.
Never in my wildest hopes and dreams could I imagine how life-changing the stem cells would be (this eternal optimist momma had a major reality check on "positive thinking" with the dysautonomia world.... I became more of a realist to help her survive this nightmare since 2010.) In 2017, seven long years later, we desperately tried the stem cells to help ease her painful and debilitating symptoms all the while, if I am honest, we doubted how much could they "really" help. I have never in my life been so happy to know how wrong I was when I first doubted how effective the stem cell treatment would be for her. Also, Mik has NOT had ONE side effect from stem cell treatment.
We promised you when we started this journey, we would update you on her progress. Oct 2010 - Jan 2017... mostly homebound life. Unpredictable symptoms. Mostly wheelchair use when out. Could not stand on her feet for more than a few minutes before she would start feeling symptomatic (or a fainting episode would abruptly happen).
Jan 2017 - Received Stem Cells for the first time (3 infusions)
Summer 2017 - Received Stem Cell Booster Dose
Summer 2018 - Received Stem Cell Booster Dose
This is her latest: she is working this summer at her aunt's bakery on her FEET for hours. Prior to going to work, she does the elliptical machine! January of 2019 she was well enough TO GO AWAY TO COLLEGE!! She will be going back to school in the Fall and working on a Psychology Degree for counseling. Did I mention she made DEAN'S LIST for the spring??? Take that Brain Fog!
She has energy. She has mental clarity. No fainting or seizure episodes. No GI difficulties or problems swallowing anymore. Migraines gone. Yes, she still needs a nap in the afternoon (regular nap length about an hour). However, this is far different than sleeping 18 hours or more per day and living her waking hours in a fog in pain and weakness. She does get the occasional ache or headache, but this is more on the level of what regular adulthood feels like : )
FAQ - Stem cell treatments are all the same, right?
Answer: No! Please do your research on any of the places you are interested in. Do not just take their word for their results. Talk directly to patients. In our case, we interviewed over a dozen of people we either knew directly or had a friend connection before we selected Celltex, whom they used as well. Not all stem cell banking, infusion, etc is exactly the same. Please do your research!
FAQ - Do you recommend Celltex?
Answer: Quite simply, yes! For those of you who personally know us, you know we do not casually offer a recommendation. It drove me bonkers having people around the country contact us through our charity website to tell us there was a "cure" for dysautonomia and it only cost $X. False hope to desperate families like ours were in those early dysautonomia years can be mentally devastating.
At Mik's first appointment with Dr. Jones (Celltex), he first told us he does not promise a cure. I thought, FINALLY, someone who is honest! He did say he is amazed through their research the positive responses his patients are having and Mik is a great candidate for it.
However, just because I highly recommend Celltex for my daughter, this means I recommend you to consider them too... NOT blindly accept it. Do your research. Go to one of their free seminars they have around town. They are not pushy and many current patients will attend the seminars to help answer any questions you may have.
If you have any questions, please reach out to me or Mik. We will be happy to answer any questions.
The next chapter for MHHA: while Mik is working on her counseling degree, I am too! My heart and passion is helping to serve our grossly neglected chronically-ill youth. My masters will be in counseling and my focus will be on helping youth and their families navigate the emotional road chronic illnesses can take us all on (both patient and family).
Our prayers are with you and praying for better health for all of you!
Here's Celltex's latest blog message Mik wrote:
I was diagnosed with Dysautonomia back in 2010 after collapsing on the dance floor at my freshman homecoming dance. I was pulled from public school and became home bound and wheelchair dependent. I suffered from constant syncope episodes, severe fatigue, fibromyalgia, seizures, migraines, brain fog,...
