Who’s in to help Ty’s Crew and enter to win a FREE Fall Mini?? JGP is matching every dollar donated!!!

Friday, August 2, 2013

I’m sure you have heard me mention before that my little guy has medical issues, he has a bleeding disorder called hemophilia, this disease does not allow his blood to clot normally which can lead to many complications, especially with joint or head injuries.  Luckily we had him tested when he was born and knew it was a possiblilty since it is genetic disease and I have a mild form as well, naively I didn’t ever imagine that my little guy would a more severe case than I.  Right away we joined the Rocky Mountain Hemophilia Chapter, which is associated with the National Hemophilia Foundation.  They were instrumental in calming a new mom’s fears of a baby with a new scary diagnosis.  We didn’t know with Ty’s levels exactly what his life would be like, they showed us that he could live a “normal, happy” life, and I will be forever grateful.  Has he had his challenges? YES! He had multiple painful joint bleeds this last year, it is never fun to be “different” at school and not be able to join in activities or have to sit out of recess.  Reoccuring joint bleeds effect the joints in a very negative way, they basically breakdown the joints over time which can lead to crippling effects.  What do we do when Ty has a bleed?  He gets Factor 8 though an IV which his Dad, Chris gives him at home, unless it is a head injury, then we are rushing to the ER to make sure everything is all good.  These “shots” were always a traumatic event at our house with crying and anxiousness, thankfully this year Ty had a change of heart.  Every year we attend Education Days and Family Camp with our Rocky Mountain Hemophilia chapter and all of the sudden this has made the world of difference.  We would always remind him when he had to skip recess that his friends from camp were in the same boat but this year at camp Ty had a lightbulb moment and decided after a family discussion with the doc in our camper that he wanted to start treating by prophylaxis which means that he would get “shots” three times a week so that he could keep his levels at a normal level and not have as many bleeds, this would help save his joints and avoid problems in the long run.  What six year old decides that?…and now takes it like a champ, he never complains but gets up with Chris at 5:30 am before Chris leaves for work to get his factor.  Ty mentioned this week that he wants to start infusing himself, they start teaching at six so he is at the perfect age, I’ll have to keep you updated on how learning to give himself IVs goes :)

Why am I telling you all of this?  Well……our organization is teaming up with the National Hemophilia Foundation and doing a walk in Bozeman on Sept. 7th.  This is our chapter’s major fundraiser, it is imparative that we do well so that we can continue to support the affected members of our community in Montana and Wyomming.  I know what a diference this group has made in my family’s lives.  I have seen first hand how much it has meant to Ty to have relationships and firendships with other kids that are going through the same challenges that he is and that understand him.  Our kids cherish the time that they get to see their friends at education days and family camp.  How can you help?  Visit www.hemophilia.org/walk   and click on “Rocky Mountain MT” Join a Team enter “Ty’s Crew” then click Donate.  We would love to have you come register and walk with us at the walk or make a donation or both!! Every little bit helps!! To sweeten the pot we thought it would be fun to have every person that donates to Ty’s team be entered into a drawing for a Free Fall Mini!  And because we so believe in this organization and the cause, Jana Graham Photography will match every dollar donated!  Please help us support Ty and all of the affected families in this area!

forweb1Ty learning to infuse on his Dad at Family Camp this year!






One response to “Who’s in to help Ty’s Crew and enter to win a FREE Fall Mini?? JGP is matching every dollar donated!!!”

  1. Patricia Espenscheid says:

    We are so with you. Such a lovely family pulling together.

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