heard her story way before I got the chance to hold
her for the first time. Her story was heartbreaking
and she had only been in the world for less then a day.
She was born about 7 hours away from the compound up
in the hills into a family with 4 other kids. She was
born disfigured,she had a cleft lip, cleft palate, extra
digits, a un developed right eye, crippled hands and
a wonderful ability to turn purple.She was labeled cursed
and was brought to our door step to be fixed or hidden.
They didn't want her unless she was made perfect and
they didn't refer to her as human but a item of some
sort. When surgery wasn't an option seeing how she was
barely 2 days old they informed us that she would be
killed by their hands or their village if we didn't
I went and found Heather
(who is one of the big dogs here on campus) and asked
that if she was kept by us and seeing how I am here
for a while if I could help take care of her. I was
told yes and plans were made. This arrangement gives
her the one on one attention she needs and keeps her
immune system protected. The parents signed her over
and I gave her a name, Sarah Rou. I have learned how
to tube feed her but also she is able to take a bottle
pretty well. Now at a month old she has proven to be
quite I fighter, all of her different disfigurement
actually fit into a genetic disorder called Trisomy
13. This genetic disorder is surrounded by scary adjectives
such as NOT COMPATABLE TO LIFE, but we'll just see about
So, my little Sarah has been
in her new life at the mission almost a month now and
has the amazing ability of being a little under 7 pounds
and having all wrapped around her tiny fingers in love.
I know on my side of things this little angel has me
wrapped around her tiny life but really
no complaint on my side even through broken nights,
rough feeding and health reasons, she is my girl. We
have learned to take each day in the fullness of the
wings of our protector, relaxing in the hammock
and just simple cuddle when the stress of the day threatens.
My little Sarah Rou is a fighter and a simple gift from
God a reminder us to take each day to the fullest.
to Trisomy 13
You can read more about
Trisomy 13 and receive incredible on-line support through
the private message board on www.livingwithtrisomy13.org.
-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.