Aislinn's Treasures-Away from Home

Earlier this year, I traveled with fabulous ladies from Miracles for Mito (MFM) to Pennsylvania for the United Mitochondrial Disease Foundation (UMDF) Symposium.  This symposium brings doctors, patients, caregivers, support groups, and vendors together.  As Mitochondrial Awareness Week approaches, I could not help but reflect on my whirl wind weekend and share my experience.

The symposium included panels held by doctors.  Imagine having a stolen moment to discuss meaningful subjects with doctors on the cutting edge of research and the on the eve of the release of new medications.  Priceless, right?  I asked my captive audience about his or her thoughts on growth hormone treatment as the care giver to my growing child.  I asked about possible avenues to share genetic data.  I asked about homeopathic treatments in connection with western medicine.       

I was deeply touched by a break out session titled Alternative Healing.  I was expecting a discussion on non-pharmacological treatments such and Tetrahydrocannabinol (weed/pot/marijuana) or acupuncture. I events brought a beverage to wash things down in case there were samples.  Haha!  Much to my surprise the discussion was on building better communication with your doctors!  This breakout session brought a welcoming aspect in giving homework items to the doctors involved with caring for yourself or a loved one.  For example, researching newer medications or reaching out to other specialist.  Hold on…in a two way communication highway, you or your loved one or care giver would be given homework, such as, documenting energy levels, symptoms for new and/or current medication!  

Miracles for Mito (MFM) was one of many support groups with a booth.  Attendees shared their stories at the MFM booth, at the awards dinner, and even in the lounge.  One thing is for sure MFM had an impact and our shirts were a hit.  Yes...connections were made spreading the word about MFM mission. 

My ability to step onto the plane could not have been possible without my support group.  As you may have read in my other blogs, I have a daughter with severe intellectual and physical needs who is living with a GRIN1 mutation.  She requires care 24/7.  Leaving her took all my might and took raw courage that I never knew I had.    It took a team of people under one sky to make it possible.

I am not alone in this journey!  Maria, Heather, Angela, and Lorene I loved the stories you shared because they helped pass the time.  Your friendships have deep meaning.  I am not sure who else I could crackup with while describing multiple visits to the Emergency Department, moments of flipping out as we advocate for our kids, obsessing over medications/calories/supplements, or how we function on such little rest. I hope you know you are part of my powerful village!

I must give thanks to MFM for inviting me to the conference and believing I would share my journey.  The vision for MFM continues to change my life in the most inspiring way! 

Much love,

Michelle D.  Voss-Shelley, APA (Mom to seven year old Aislinn with a GRIN1 mutation)