Sarah Rou

I 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 keep her.

 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 that.

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.

 

Back 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.