When our daughter was born she
had all odds against her. Her left side hadn’t
fully developed leaving her with a partial, mitten hand
and a club-type foot. The restriction bands (she
was diagnosed with Amniotic Band Syndrome) that formed
in-utero made her leg look like sausage links.
Her right hand had fingers with webbing to the second
knuckle, her fingers were varying lengths, and bands
had affected some fingers as well. Additionally,
she had hydrocephaly and a staph infection in her blood
stream. As if she needed one more strike, she
was born in a poor country where physical differences
are not seen in public and insurance doesn’t exist.
Her birth parents surrendered their rights within two
days of her birth. After two months in the hospital,
Kseniya was moved to a “baby house” (orphanage).
All was not hopeless, though, because God had a plan!
When Kseniya was one month short of her fifth birthday,
we learned about her through a series of connections,
and God made it clear she was meant to be our daughter.
Five months later, she was home and the
medical appointments began.
There was no indication left of hydrocephaly though
we had been told she was treated for it twice in her
birth country. The anomalies caused by Amniotic
Band Syndrome are considered severe and her case has
stumped seasoned doctors a few times, but nothing has
stopped Kseniya! Doctors were able to separate
all the fingers on her mitten hand and bring the webbing
to normal position on her other hand. Her partial
foot was amputated and she was fitted with a prosthetic
(a driving force of perseverance for Kseniya).
We have had many more appointments, surgeries, and infections
than we expected, but when it’s your child, you
just do it. It becomes your normal life and you
don’t mind. Yes, you get tired some times,
but those times don’t last.
Kseniya may look different, but she is a pretty typical
pre-teen. As a matter of fact, her spirit shines
so strong that most people don’t even notice her
differences right away. She writes, runs, jumps,
climbs, swims, etc. She motivates and touches
others just by existing. What a gift God has given
us and the world!
to Other Stories
-The support, information and encouragement provided by the PPFL parents is not meant to take the place of medical advice by a medical professional. Any specific questions about care should be directed to a health care professional familiar with the situation.