As we flip to the month of March on
our calendars, I cannot help but feel a sense of great joy and great sadness. On March 11, 1983 my daughter Allison was
born. She came into this world with a
relentless spirit. She left this world
with that same relentless spirit on April 21, 2006 at just twenty-three years
old.
In the past, turning the page on the
calendar from February to March was always exciting for me because it was time
to celebrate Allison, who believed HER day of birth should be a national
holiday. Little did we know that when
she came roaring into this world much earlier than expected, she brought with
her a rare syndrome called Ehlers-Danlos Syndrome Vascular Type (VEDS). Allie was born with a clubfoot, and her lungs
ruptured several days after her birth. We
were told that her foot and lungs were “no big deal” and that we could fix both
complications. For twenty years, Allie
lived a full life with few limitations.
The summer after Allie’s freshman
year at UT, she had a mini-stroke. This began
our long journey to discover a final diagnosis for Allie. The mini- stroke apparently signaled something was
clearly not okay. We saw doctors locally,they ran tests, and we were finally referred
to specialists in Dallas, all the time thinking something would be discovered
and we could fix whatever it was that was wrong.
Allie returned to her beloved UT
and continued classes between trips to Dallas doctors, many ER trips, and
hospital admissions. Once we were in a
doctor’s office waiting room, and Allie turned to me and said, “Mom, something is
not right. I know it.” I will never
forget that moment and the look on her face. She knew.
Allie called me later saying four
words, between her tears: Ehlers-Danlos Vascular Type. At that point we still had no idea what those four
words meant and what they would mean for
her life.
After reading about VEDS online,
suddenly the twenty-one years of her physical life made sense. As it turns out, the clubfoot, preemie birth,
and ruptured lungs all signaled much more than “we can fix that.” However, Allie was not a person to ever think
she needed “fixing.” This was one of her
lasting legacies to her family and friends. People do not need “fixing,” and people are not less because of a
difference.
Her doctor said that Aliie was “no
shrinking violet.” We knew that Allie
would not agree to just sit down and stop living life. As odd as it may seem, as a mom, I could not
have been prouder of that description of my child, even though I knew she would
possibly die sooner rather than later.
I began my
daily research on VEDS, found an online support group, and joined the Ehlers-Danlos
Syndrome National Foundation (EDNF). I
now support the EDNF and their efforts to research this tragic syndrome.
This brings me to the main point of
my blog. Friday, February 28 was Rare
Disease Day (https://www.rarediseases.org). I want to shine a light on the importance of
supporting research efforts on behalf of those diagnosed with rare life
threatening and/or life altering situations.
All of us are likely familiar with campaigns for cancer or heart
disease. However, most people are
unaware of the rare diseases that desperately need funding for continued
research efforts and support.
Very little is known about VEDS. For years, I wore my tie-dyed armband to show
my support for EDS Awareness. In 2004,
the ENDF had very little information on the their website. Those of us
searching for information and support groups had to work on our own to find one
another. Now, in March 2014, the ENDF
website has improved exponentially. They even have a blurb on the home page now alerting readers about the severity of VEDS, encouraging people to seek
immediate medical attention. Together families, patients, and healthcare
providers affected by EDS have combined their voices to raise awareness and
continue research in this important area.
People living with VEDS often have major organs and blood vessels rupture. During Allie's life time, her lungs ruptured several times, her spleen ruptured, and her major blood vessels ruptured, somehow she always managed to pull through those tough times. After graduation from UT, Allie moved to Washington D.C. where she worked and lived a full life. While living in D.C and loving life, Allie's aorta ruptured and she died from complications of VEDS. Sadly, nothing much can be done to repair a ruptured aorta for a person with VEDS.
This March, Allie would be thirty-one years old. She gave us more than we ever gave her. She taught us more about living and life than we ever knew before. She reminded us to compliment others “the second we had a good thought about someone” and not to wait! Her never-ending courage and bravery continues to inspire us all everyday.
People living with VEDS often have major organs and blood vessels rupture. During Allie's life time, her lungs ruptured several times, her spleen ruptured, and her major blood vessels ruptured, somehow she always managed to pull through those tough times. After graduation from UT, Allie moved to Washington D.C. where she worked and lived a full life. While living in D.C and loving life, Allie's aorta ruptured and she died from complications of VEDS. Sadly, nothing much can be done to repair a ruptured aorta for a person with VEDS.
This March, Allie would be thirty-one years old. She gave us more than we ever gave her. She taught us more about living and life than we ever knew before. She reminded us to compliment others “the second we had a good thought about someone” and not to wait! Her never-ending courage and bravery continues to inspire us all everyday.
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| Allison Ann Bucy 3/11/83 - 4/21/06 |
http://www.ednf.org/vascular-type
http://www.cnn.com/2014/02/28/health/rare-disease-day-irpt/
