The Birdsinger Family

Hi There...and thanks for checking out our Profile!

I would like to introduce you to my 9 year old son, Clifford! Clifford was my family's first child and he was born with a rare genetic disorder called Pontocerebellar Hypoplasia, a chronic and degenerative genetic condition.

When Clifford was born in April of 2015, my wife and I were unaware of any disabilities, so after 3 months in the NICU, we were only able to bring Clifford home after he received a trach and we were trained to care for a child who required a ventilator for breathing and a feed pump with a g-tube for eating. Clifford required 24 hour nursing care, a wheelchair as he is quadriplegic, and uses an eye-gaze machine to communicate.

When Clifford was in the NICU, his Neurologist advised my wife and I that we were the parents of a complex special needs child and that we should manage our expectations for Clifford. While this may have been a staggering set back for other families, my wife and I accepted that challenge knowing that God does not make mistakes! My wife and I laid out the the following Life Rules for Clifford: A) We wanted Clifford to experience Love B) We wanted Clifford to express Love, and C) We wanted Clifford to experience as much of the beauty of God's creation as possible. These Life Rules have been our family's rally cry and, in spite of Clifford's physical limitations, he has changed the way his parents, little sister and little brother approach Life!

Clifford seems to do what others (including medical professionals) think he is not able to or shouldn't be able to do! Clifford flew to Texas with his family in 2017 to meet his ailing Grandfather (and namesake) in the final chapters of his Grandfather's life. Clifford has put his feet in the ocean, gone hiking in the mountains (on Dad's back, of course), and laid in a wheatfield in the Shenandoah Valley making shapes out of the clouds. Clifford has experienced Gettysburg from atop Little Round Top and ridden horses (animals absolutely LOVE Clifford). Clifford goes to visit family in Delaware every summer and spends time on the farm and at the Delaware State Fair (he prefers the Ferris Wheel but he's partial to the roller coasters). 

Simply put, our Life Rules for Clifford has had an incredible effect on our Family, his classmates, our church and essentially everyone who comes in contact with him. While he is non-verbal, he can communicate with his eye-gaze machine or, if the eye-gaze is not available, yes/go by looking to his right and no/stop looking to his left. There is no doubt that Clifford is loved and he exudes love to all those around him. Plus he throws the coolest birthday parties in the neighborhood and all of the other kids think he is a Super-Hero (because he is!).

In January of this year, our insurance provider no longer provided 24 hour nursing care, leaving our family with the limited nursing help that Medicaid provides. Clifford requires constant supervision as his seizures often knock his ventilator tube off of his trach or his trach may require suctioning if congested. Clifford receives numerous round-the-clock medications to mitigate his seizures and regulate his digestion. Clifford's seizure and clonus activity along with his medical prescriptions administration require around the clock observation and care.  This added workload to our family has had a domino effect with my wife's ability to work as she and I now fill the nursing coverage gaps, which include overnight shifts. I still work full time but my wife is no longer able to be a health & wellness consultant and her availability to tutor (she is a Teacher by trade) has been greatly diminished in addition of the task of looking after our other two children. Any contribution you feel moved to donate to help keep this dream alive and assist us with our monthly financial obligations is greatly appreciated.

God Bless-

The Birdsinger Family