Jordan's Story

I was born with a complete unilateral cleft lip and palate which also affected my left eye. All of my limbs were affected as well. The doctors say that Amniotic Band Syndrome is what caused my differences. They believe amniotic bands wrapped around my limbs and across my face during the early developmental weeks.
When I was born my mommy tried nursing me and then tried a normal nipple on a bottle to no avail. With my open palate (the roof of my mouth is wide open) I cannot create suction. If I were born in a hospital that was unprepared, and in a country where there were no resources for me I would have starved to death. This is not an exaggeration.
When people first saw me they were shocked. Many people would stare in public, some asked questions, some didn't but they all stared. Kids said I looked "weird," "gross," and some adults allowed it. In other countries with less awareness and less tolerance I would have been shunned and isolated. I wouldn't even be allowed to attend school.
My lip repair may have improved my appearance on the outside but inside my mouth is still wide open. I was getting constant ear infections, painful ear infections week after week until my drainage tubes were put in. During those months of ear infections, caused by my cleft palate, I was considered deaf and heard little or no sound. Had I not received the medical care I needed in ear tube placement I could have lost my hearing forever as a result of constant ear infections. THIS IS PREVENTABLE! My speech is delayed already, even with the early placement of ear tubes imagine what happens to children who never get tubes simply because they don’t have the resources.
Lack of hearing (affected by the fluid in my ears as a result of the cleft palate) can cause speech delay but another speech challenge is the inability to make certain sounds. My speech will be affected even with the most advanced surgeons repairing my mouth, imagine what would happen to a child who never receives the palate repair. They will be further ostracized and isolated without communication. How will they work? How will they connect with others?
If it weren't for the medical advances we have, along with the opportunities here in the United States, my story would be very different. My family never gave this subject much thought before I was born and they are so very thankful for the opportunities available to me but they realize that so many others like me don’t have a chance without help from others. We have so much and this gift costs so little.
We encourage you to give generously but are so thankful for anything you have to offer.
Thank you for visiting my page!
With Love,
Jordan Joy Gray