MAN ON A MISSION: ABS SURVIVOR TO LAUNCH RIDE FOR HOPE IN MAY
Denver, CO, February 8, 2010 – Cycling across the country is something to which many people aspire each year. However, few have challenged themselves when doing so means cycling with a prosthetic leg that was placed as a result of a rare birth defect known as Amniotic Band Syndrome (ABS). On May 1, 2010, Chris Bowman will cycle over 2,500 miles from _Beaverton__, MI toward Portland, OR in order to bring hope to children and adults living with this condition around the country.
Now 33, Bowman was born in 1976 in Howell, MI with an unsuspecting birth defect known as ABS that caused a cleft lip and palate, missing fingers and toes, a club foot and the loss of a leg below his knee. ABS is caused by the early rupture of the amnion during pregnancy, which often results in amniotic bands that become attached around the unborn baby. The bands most often affect the extremities but complications can range from ring constrictions, to amputations, to major organ defects.
While Bowman has since undergone numerous surgeries to improve his quality of life, he did not learn until recently that his condition actually had a name and that an organization called the Fetal Hope Foundation supported families when diagnosed with this among many other in utero fetal syndromes.
“I grew up feeling isolated, like I was the only one like me in the world. That led to feelings of anger, bitterness, and isolation. Once I [researched my condition], I saw there were many people just like me in the world also hidden, isolated, and with no dreams or hope for a "normal" future,” said Bowman.
With this newfound information, Bowman decided to set a goal of cycling cross-country, not as an advocate, but just to prove he could do it despite all odds. However, through various social media outlets such as Facebook, he began meeting families around the country who had children living with his same condition and wanted to make a difference. As a result, he teamed up with the Fetal Hope Foundation in order to be a part of supporting families when faced with fetal syndromes.
Bowman said, “I’m not doing this ride for me anymore, I’m doing it for Kayla, and Mikhala and dozens more that I know who have ABS. I’m doing it for my friend Ron's kids so he can show them that anything is possible. I’m doing it for my mom so she doesn't have to wonder what kind of life I will have with such a disadvantage from the beginning. I am doing this ride for my daughter so she can say ‘that’s my dad!’”
Bowman will launch his ABS Ride for Hope on May 1, 2010. Along with documenting his journey via video and journal, he plans to meet many families of ABS survivors along the way, and will also be speaking at and meeting with various schools and hospitals in order to increase awareness about the condition and to spread a general message of inspiration.
The Fetal Hope Foundation focuses on providing support, providing information, funding research, increasing awareness, and serving as an outlet for leading medical information pertaining to fetal distresses and syndromes. For more information on the ABS Ride for Hope or the Fetal Hope Foundation, please contact Talitha McGuinness at 980-721-5799 or visit the website at www.fetalhope.org. To view preliminary route information for the ABS Ride for Hope, please visit http://2010rideforhope.blogspot.com
Monday, February 8, 2010
More information on ABS and how you can help!
If you would like more information on Amniotic Band Syndrome and what is being done to help those with ABS please visit the following sites.
www.fetalhope.org
www.amnioticbandsyndrome.com
If you would like to donate to my bike ride specifically please visit:
http://www.active.com/donate/fetalhope2009/rideforhope
You can also find general donation information at www.fetalhope.org
www.fetalhope.org
www.amnioticbandsyndrome.com
If you would like to donate to my bike ride specifically please visit:
http://www.active.com/donate/fetalhope2009/rideforhope
You can also find general donation information at www.fetalhope.org
What is Amniotic Band Syndrome???
So what exactly is ABS and how did it affect me? It is a set of congenital birth defects believed to be caused by entrapment of fetal parts (usually a limb or digits) in fibrous amniotic bands while in utero. Before I was born the body parts that shows signs of ABS (arm, fingers, toes, etc.,) were caught up and entangled in string-like bands. This caused abnormalities that were present at birth.
With Amniotic Banding no two cases are exactly alike. There are several features that are relatively consistent: syndactyly (webbed digits), distal ring constrictions, deformity of the nails, stunted growth of the small bones in the digits, limb length discrepancy, distal lymph edema (swelling), and congenital band indentations. ABS affects approximately 1 in every 1200 live births. It is also believed to be the cause of 2% of all miscarriages. Recent literature supports that ABS occurs more often than once thought. Up to 50% of cases have other congenital anomalies including cleft lip and palate and clubbed foot deformity. Hand and finger anomalies occur in up to 80%. I was born with all of these. A cleft lip and palate is basically a giant hole in my face between my mouth and nose. The results of the upper lip and upper jaw not being completely developed, leaving a sizeable gap in the middle of my face. I am missing parts of my ring finger and all of my middle finger on my left hand. My right hand has all of the thumb and index finger but missing most of the other three fingers. On my right leg, just below the knee was a little cartilage filled foot but no lower leg bones to support it. So this was amputated, shortly after I arrived at University of Michigan Hospital after my birth. In some cases a complete “natural” amputation of a digit(s) or limb may occur before birth or the digit(s) or limbs may be necrotic (dead) and require surgical amputation following birth.
I was fitted for my first prosthesis at nine months old. I took to it pretty quickly because it gave me the freedom to keep up with the other kids. At the age of 15 months I was walking on my own with help from the prosthesis. Even to this day I would much rather wear it then to leave it off. It gives me the freedom to move when I want to and without a great deal of pain and discomfort.
With Amniotic Banding no two cases are exactly alike. There are several features that are relatively consistent: syndactyly (webbed digits), distal ring constrictions, deformity of the nails, stunted growth of the small bones in the digits, limb length discrepancy, distal lymph edema (swelling), and congenital band indentations. ABS affects approximately 1 in every 1200 live births. It is also believed to be the cause of 2% of all miscarriages. Recent literature supports that ABS occurs more often than once thought. Up to 50% of cases have other congenital anomalies including cleft lip and palate and clubbed foot deformity. Hand and finger anomalies occur in up to 80%. I was born with all of these. A cleft lip and palate is basically a giant hole in my face between my mouth and nose. The results of the upper lip and upper jaw not being completely developed, leaving a sizeable gap in the middle of my face. I am missing parts of my ring finger and all of my middle finger on my left hand. My right hand has all of the thumb and index finger but missing most of the other three fingers. On my right leg, just below the knee was a little cartilage filled foot but no lower leg bones to support it. So this was amputated, shortly after I arrived at University of Michigan Hospital after my birth. In some cases a complete “natural” amputation of a digit(s) or limb may occur before birth or the digit(s) or limbs may be necrotic (dead) and require surgical amputation following birth.
I was fitted for my first prosthesis at nine months old. I took to it pretty quickly because it gave me the freedom to keep up with the other kids. At the age of 15 months I was walking on my own with help from the prosthesis. Even to this day I would much rather wear it then to leave it off. It gives me the freedom to move when I want to and without a great deal of pain and discomfort.
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