NIKOLAI STRIKES BACK
NIKOLAI - GREAT LAKES HEMOPHILIA FOUNDATION
My great-grandson, Nikolai Jopek, was born with severe type 3 Hemophilia on
July 26, 2012. Just after he turned 1 in 2013, he had a port surgically placed in
his chest to facilitate the every other day infusions of Factor 8 that he needs to
clot his blood. This is a life long blood disorder and so far ...no cure in sight.
Last September, a mere 10 days after Nikolai’s surgery, our team “MAY THE
FORCE BE WITH YOU” walked in the Great Lakes Walk for Hemophilia held
at the Milwaukee County Zoo. Because of all the generous people...friends and
family... our team placed first in the Milwaukee area. We collected almost $4000.
This money helped build “CAMP CLOTTY PINE” in Wisconsin so that these
“special” children will have a place to be with other kids like themselves. Along
with “safe” activities , ones that other kids take for granted, these kids learned
how to play safely and to treat their many bleeding episodes. They learned how
to infuse themselves...setting up all the medical equipment needed to do so.
The success rate was 13 out of 18, starting at 7 years old.
Hemophila is classified as a rare disease, only about 400 children are born a year
with this disorder. Our family has placed this charity at the top of our list. We
continue to hope for a break through for a cure.
Nikolai turned two on July 26th. He is a pro at being infused. Brave and few tears.
In keeping with the “STAR WARS” theme, our team “NIKOLAI STRIKES BACK”
will again join the Free Walk at the Zoo on September 27th at 9:00 A.M..
We would welcome you to walk with us. Come and meet these wonderful kids
and special people. There is FREE parking and FREE admission
to the zoo. You may enjoy the zoo all day if you wish.
We are also kicking off our fundraising drive and hope to raise $6000 this year.
If you would like to donate to this wonderful charity you can make checks
payable to GLHF (Great Lakes Hemophilia Foundation) . A formal receipt will
be sent from the foundation so make sure you include your name, address, phone
number and Email. Donations should be mailed in care of :
Committee Member for GLHF
S98W32854 Genevieve Dr
Mukwonago, WI 53149
Our team is also selling vinyl bracelets with the logo “NIKOLAI STRIKES BACK”
for $2.00 and T-shirts for $20.00. If you need info, please call 262-363-4019.
We hope you will join us.
Thank you from the bottom of Nikolai’s heart and mine.
Warmly and with love,