Page 12 - HFA Dateline 2016 Q3 Fall

days alone with just the family, letting the children get to know each
other while we recovered from our jet-lag.
Within a week of coming home, however, we took Luke to our hema-
tologist for an evaluation. We had arranged this appointment ahead
of time and requested a Mandarin-speaking translator to help en-
sure a smooth visit. The lab work was completed that day and severe
hemophilia A was confirmed as the diagnosis. He had developed a
toe bleed so he received a dose of factor VIII and, upon waking the
next morning with his toe feeling better, he gave us a happy thumbs
up for his new medicine. Luke soon began physical therapy for his
knee and began prophylaxis twice a week. Over the course of the
next several months, he made amazing progress, growing physically
stronger and regaining full use of his knee. The first summer Luke
was with us, he was able to attend Camp Bold Eagle where he learned
to self-infuse and he is now independent with his infusions. Because
he experienced occasional breakthrough bleeds at that time, the
hematologist increased Luke’s prophylaxis to three times per week.
In the six years since, he has not experienced one bleed.
Integrating into everyday life was naturally a process for us and for
Luke. He had to learn to live within a busy family with varying agen-
das and often hectic schedules. This was challenging because he was
used to living in a more regimented community on a strict schedule
so it took him some time to learn how to handle spontaneity and “go
with the flow.” He had never been allowed to be physically active
at the orphanage, so he had to adjust to doing things he had never
been allowed to do. Now, almost seven years after the adoption, life
for Luke is much different. In his freshman year of high school, he
earned excellent grades, played violin in the school orchestra, and
even participated in team sports. He is now physically strong and
healthy, and has family and friends who love him dearly.

Luke’s story has inspired the director of his adoption agency to start
advocating for children with hemophilia who are living in China and
seeking adoption. The agency now routinely searches for boys with
hemophilia, and then contacts me and several other moms in the
community who then go to work championing their adoptions. In
just this past year, we have matched more than ten boys to families
and encouraged other adoption agencies to begin representing chil-
dren with hemophilia. Through my involvement, I have met many
amazing people; one mom who adopted her son a few years ago
started the Hemophilia Adoption Facebook page. This group con-
sists of people who have adopted, are considering, or are in the pro-
cess of, adopting a child with a bleeding disorder. We are creating
a network of advocates, mentors, and experts in hemophilia-related
adoptions. I am blessed to be a part of this growing community. n n
Shari lives in Michigan with her husband Dave, 22-year-old son Jay,
16-year-old twin daughters, Anya and Isabella, and her 16-year-
old son Luke. For more information about her hemophilia adoption
efforts, Shari can be reached at sluckey@hfmich.org.

12 Dateline Federation | Fall 2016