Monday, October 22, 2018

Learning To Fly

Well, I started out down a dirty road
Started out all alone
And the sun went down as I crossed the hill
And the town lit up and the world got still

I'm learning to fly, but I ain't got wings
Coming down is the hardest thing

It’s hard to believe that five years has passed since our last post in October 2013.  In, we shared a video interview highlighting the girls’ lives and next steps.  Emma was getting ready to head off to college and Maddie was preparing to be a high school freshman. About the same time, we took the decision to put the blog on hold so the girls could be who they wanted to be without a blog reminding them of the challenges they face.  Now that some time has passed, we have decided to return to sharing stories about our lives.  So, in honor of Disability Awareness Month, we wanted to offer a summary of what we have been up to over the past few years. 

Emma attended Ursinus College in Pennsylvania and graduated with a double major in Biology and International Relations.  During her time in college, she attended multiple Model UN programs in New York City and pursued her interest in genetics.  After graduating, she took a Patient Advocacy role at the UF Powell Center for Rare Disease Research and Therapy.  At the same time, she began a six-month physical therapy research study which helped her develop a focused exercise program, gaining strength along the way.  Most recently, Emma returned to student life by deciding to take on the MPH (Masters, Public Health) program at University of Florida.  Her focus is on global health while continuing her work at the Powell Center.  The future is bright for Emma with the coming years laying the groundwork for her future.

Maddie finished high school in Pennsylvania and, after completing a detailed college search, decided to attend the University of Florida.  She is now a sophomore pursuing a major in Communication Science with minor in Disabilities in Society.  On top of her major, Maddie has continued her love of music and singing by joining No Southern Accent, UF’s premier A Cappella group.  This has taken her to different competitions, recording opportunities, and soon to be posted songs to Spotify and iTunes.  At the same time, Maddie has continued her calling to help others with disabilities live their best life and achieve their goals.  Last year she began work with UF’s Disability Resource Center as an Educational Assistant where she supported students with their classes.  This year, she is the Assistant Director of Disability Affairs for the UF student government.  In addition, she has volunteered at Camp Boggy Creek, a camp supporting children with various diseases and disabilities.  Maddie continues to pursue her interests and we look forward to seeing where they will take her.

The rest of our family has been quite active as well.  Our son, Carter, is continuing his degree in Kinesiology and Exercise Science at Temple University and is a cadet within Temple’s Army ROTC program.  He has fully embraced his commitment of service to our country.  This has included graduation from U.S. Army Air Assault School, Captain of Temple’s first ever Ranger Challenge Team victory, and participation in the Sandhurst International Military Competition at West Point.  He will graduate from Temple and will commission as a second lieutenant in the U.S. Army in Spring 2019, beginning his active duty commitment.  We look forward to learning where he will be stationed and are incredibly proud of all he has and will achieve.

Mom and Dad are doing well.  We continue to be humbled by the growth of our children as they pursue their passions.  Looking back over the past five years, it hasn’t been all perfect.  The challenges with Pompe continue and we have lost several loved ones including my mother and both of Donna’s parents.  Overall, we have remained optimistic about medical innovation and focused on the good things that life has blessed us with. 

The most important thing, despite it all, our family is looking forward to a bright future and along the way are…
Learning to Fly!

Learning to Fly; Tom Petty and Jeff Lynne

PS: If you didn’t know, Tom Petty is from Gainesville, FL (home of UF).  Go Gators!