Gracious Assurance is Never Homeless: The Ashley Speicher Story

Photo of Ashley
Photo of Ashley

Her soft, gentle voice conjures up the image of a little angel hovering invisibly in that holy place lying between Heaven and Earth. Even though her voice is that of an angel, her words are those of a mighty hardened warrior who has endured the slings and arrows of many, many battles that could have easily ended her life, but didn’t. The scars of her health wars are evident, but are never seen as a burden to this little “Warrior-angel.” Her grit, tenacity and indomitable spirit have been her shield and sword, and have served her well as she fought and conquered an army of challenges few of us could never begin to fathom. Never bitter, only blessed is her mantra. Service to others is her self-imposed marching orders, which she follows daily.

Ashley Speicher was born August 17, 1985. Her mom and dad, Diane and Jim, were instantly filled with joy the moment their first child entered the world. Unfortunately, their joy faded rapidly as their precious little girl’s health began to deteriorate. They discovered her tiny heart was under attack by glycogen storage disease. This disease is a member of the muscular dystrophy family, which has numerous types. Speicher's was Type 4, also known as amylopectinosis or Andersen disease. It is a very rare type and usually leads to an early death. The disease affects the liver, nervous system and heart. The muscles of Speicher's heart were becoming weaker and weaker resulting in cardiomyopathy. As her little heart began to fail her, death was lingering outside her hospital room door. Miraculously, a twist of fate gave Ashley a second chance at life. At age 11, she received a heart transplant.

“I was so sick for so long my doctors transferred me to another hospital because they believed I needed to be put on a heart lung machine while I waited for the donor. Once I got the transplant, I could breathe again. I could do things again instead of being bed ridden most of the day,” Speicher said. Even at her young age, Speicher was very aware of the wonderful gift of a “new life” she had been given due to the death of another. She wrote a letter and sent a picture of herself to the donor family, but did not receive a response. As she says,

“I left it alone,” but on the 10th anniversary of her transplant, she felt compelled to write them again. She wanted to again thank the donor family for their gift as well as share with them the goals she had achieved thus far in life. The family had moved and left no forwarding address. Needless to say, Speicher was crushed. She wanted to let the donor family know she had taken full advantage of every beat the heart has given her.

Yes, Speicher's new heart changed the direction of her life 180 degrees, but it did not eradicate residual health challenges caused by glycogen storage disease that continued to haunt her. During her high school years, weakening muscles began to affect her mobility. She did her best to hide her rapidly growing disability. She desperately did not want to stand out or appear to be “different” than her classmates. Speicher fought with every ounce of energy she had to be “just a normal kid.” She kept her disease somewhat at bay until she entered college.

“My freshman year of college was the toughest year of my life. Not only was I away from home and dealing with college life, but also my disability was taking a real toll on my life. It was at this time I began to realize I needed to be in a wheelchair,” Speicher said.

Reluctantly, Speicher began using a power wheelchair at the beginning of her sophomore year of college. Surprisingly, it opened up a whole new world for this bright and brilliant young woman who struggled mightily almost every day of her short life. Now, thanks to her wheelchair, Speicher had the energy, ability and desire to move forward and embrace every opportunity that would come her way. She immediately made up for lost time and began hanging out with friends, attending concerts, going to the mall and volunteering to do good things for others. Because she had received a second chance at life, Speicher felt volunteering was one way to honor her donor.

“Because I’ve had a transplant, I’ve always felt like I’ve incurred a debt I need to pay back. That’s one of the reasons why I wanted to volunteer and go help with the cleanup after Hurricane Katrina,” Speicher said. The decision to volunteer for the Hurricane Katrina effort frightened Speicher. Her fear? Rejection. Would organizers look at her and say, “How can a girl in a wheelchair help?” Determined to contribute to the cause, Speicher corralled her fears and forced herself to go to the volunteer
meeting. Much to her surprise and delight she was welcomed with open arms. Twice Speicher traveled to areas devastated by Katrina and helped in ways she could never have imagined. One of her fondest memories is working at an animal shelter caring for pets of all kinds that were separated from their families due to the hurricane. The journey to help the Katrina victims not only boosted her confidence, but gave her a much-needed shot of courage, too. Even with this success under her belt, it didn’t prepare her for her first encounter with discrimination.

“In college I had signed up for a class in a building with no elevator. So, when I went to the class for the first time and found there was no elevator, I went to the registrar’s office. I asked if the class could be moved to a first floor location. Their response, ‘There’s no other room available. You’ll have to pick another class.’ I really should have fought it, but at the time I didn’t have the knowledge or drive to tell them that that’s not right,” Speicher said.

As you might guess, today Speicher has the knowledge and the drive to defend herself against discrimination. She is also well armed to advocate for others, which she did as an attendee at the 2012 CELA Conference in Washington, D.C.

As a CELA representative, Speicher met with aides who serve the elected officials who represent her home state of Massachusetts. The aides' understanding of challenges that plague Speicher and others with disabilities was mixed. The turning point for those who “didn’t get it” was when Speicher shared her personal struggles with the system. At the end of the day they seemed to know change made sense. Speicher and all who attended CELA know the war is far from being won, but with each trek up Capitol Hill the signs of victory are beginning to emerge.

After a yearlong battle, Speicher finally received her second power wheelchair. Speicher continues to pursue even more of her many diverse goals with the help of the endless support of family and friends. Recently, she was accepted to graduate school and will begin work on a master’s degree in public policy this fall. While going to school, she intends to continue working with Action, Inc., a community action program that advocates for low-income and homeless individuals and families. For Speicher, this is her dream job. She truly loves helping those who, in her words, “are the most looked down upon segment of our society.”

For those people who feel they have run out of luck or are on the verge of giving up hope, Speicher's daily presence is surely inspirational. When she tells them her story of how she overcomes seemingly insurmountable odds, a sparkle of hope often returns to the eye of many of her newfound friends. Her constant and gracious assurance of her never-ending support has already helped to change lives. One struggling soul Speicher has touched kicked an addiction, has an apartment and will soon graduate from college with a degree in social work.

“I try to be an example that with a positive attitude anything is possible. If I can do it they can, too. You may have failures, but you just keep trying. You learn something from every failure. It doesn’t matter whether you fail four or five time, don’t give up. You will eventually succeed,” Speicher said.

Who should know better about not giving up than Ashley Speicher? This young warrior-angel who has defeated death more than once now uses her miraculous life to defend the dignity of others. Her words and wisdom deserve our attention. Her grit, tenacity and indomitable spirit are an inspiration to us all. For special people like Speicher who truly understand what God has put them on Earth to do...Heaven already has a special place just for them and you too.

Ashley passed away suddenly on June 2, 2012. NRRTS extends its deepest sympathies to her friends and family.

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