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Hemophilia Walk & 5K On September 21, 2013 at Floyd Lamb Park | Charity

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Hemophilia Walk & 5K On September 21, 2013 at Floyd Lamb Park
Hemophilia Walk & 5K On September 21, 2013 at Floyd Lamb Park

Hundreds of people will be taking part in the Nevada Chapter of the National Hemophilia Foundation’s Walk & 5K on Saturday, September 21.

It takes place at Floyd Lamb Park and proceeds will help send children and teenagers to a safe and supervised camp.  It allows those with inherited bleeding disorders and their siblings, to experience the great outdoors and learn important skills in handling and treatment their disorder, free of charge. The public is encouraged to register for the walk and help raise funds for this important cause at  www.hfnv.org

Among those returning to take part in the annual event is the Bartko family of Las Vegas.  Eight years ago, they never would have imagined being so involved in raising funds for inherited bleeding and clotting disorders.  But that was before their lives changed dramatically.

Alison and John moved to Las Vegas in 1999. Soon after that they welcomed their first daughter, Abbey.  A few years after that came Emily.  Shortly after giving birth, Alison noticed the “heel sticks” where blood is taken from the child, appeared to continue to bleed. The nurses, not alarmed, just suggested the bandage be put on a little tighter.  The family went home from the hospital on a Sunday.  Monday morning they were at the pediatrician’s office dealing with Emily’s umbilical cord which had also started to bleed. 

Emily was diagnosed with a rare form of hemophilia in which she is missing Factor 1, a protein which helps her blood clot.  Alison and John, both pharmacists, would soon find out, unbeknownst to them, they both carried a recessive gene for this rare type of hemophilia which affects one or two people in every million. Neither parent remembers anyone in their family with an inherited bleeding disorder. 

Emily is now 7 and a half years old. She’s pretty active and goes for prophylactic infusions twice a month.  These infusions would help “buy time” in preventing a devastating bleed if she should fall, be in an accident or suffer a severe injury. Even with the infusions, she would need immediate medical attention from a specialist.

For unknown reasons, the inherited bleeding disorder did not affect Abbey, their oldest child.  A few months ago, Alison had her third child, AJ, who is also affected by this rare form of hemophilia. 

The Nevada Chapter of the National Hemophilia Foundation was founded in 1990. Through outreach, education and advocacy it works to improve the lives of those affected by inherited bleeding and clotting disorders.  For additional information on the many types of inherited bleeding and clotting disorders, go to www.hfnv.org.

 

 

 

 

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