Ezra Bruce Burgess is almost 35 weeks old in utero. Ezra has been diagnosed with Fatal Skeletal Dysplasia. Fatal Skeletal Dysplasia is diagnosed in 1 out of over 4,000 babies. It is ranked from Moderate to Severe. Ezra's diagnosis is severe. The Doctors' have told his Mother and Father(Jessica and Phillip) that the chance of him living until birth, is less and less percentage the further along Jessica is pregnant with Ezra. If Ezra makes it to full term, they have prepared the family for the worse. Ezra is not expected to live past one hour after his birth.
Fatal Skeletal Dysplasia stops the bones from growing around 15-17 weeks in utero especially the rib cage which is essential for the lungs to develop. Since the lungs are not able to develop properly, Ezra will not be able to get the proper oxygen levels needed for all his vital organs to thrive as a normal baby would.
Jessica's Own words:
I was preparing myself for Ezra possibly being born with dwarfism. Having a little person was absolutely fine by me as long as he was healthy in every other way and I knew we would still be blessed. He's loved so big and we were still beyond excited to have this baby boy.
Our Birmingham trip determined a nightmare of a different plan for us. Our sweet angel has a genetic disorder called lethal skeletal dysplasia. They rate it mild, moderate, and severe. His is severe and there is nothing that can be done. His long bones can't and are not forming as they should. His chest cavity is too small for his lungs to develop and work on their own. If at all, he will not survive long after birth. He will pass with respiratory failure. I will carry him full term unless he passes in my womb before and deliver in Birmingham. We will continue with long trips to the specialist for the months ahead until the day we bring him home to rest.
My heart is shattered into a million pieces. Never did we ever imagine this. Every time I wake up from what few hours of sleep I do get, I'm sobbing with tears hearing that Dr. Telling me over and over "I'm so sorry." I feel his little kicks and they let me know he's so alive... Then I'm reminded that as soon as our sweet angel is brought onto this earth, we will be forced to say our goodbyes for now. Although I just can't understand I'm trying so hard to search for that silver lining. This will be a long hard road but I know we will make it.
I'm so thankful for my amazing husband. He's my rock. Not only is he going through it also, he has been holding me for days straight while I break. I don't know what I'd do without him.
Also, all of our family and friends. I thank you all so much. We know that you are all here and that you all care. Just knowing that means more than you realize. Your love and prayers are greatly appreciated. I'm so sorry if I haven't responded to calls or text. Most of the time I just can't talk. We know you're there."
The family believes that Our God Almighty has the final say. We will praise his Holy name no matter what he decides.
This Go Fund Me Page is set up for the possibility that the unthinkable may happen. The family will need the extra income for possible funeral expenses, time off work, food, clothing, shelter etc.
Thank you so much for your continued love, support and many prayers for Ezra and his family's behalf.
- L Trevino
- Angie Nard
- Hannah Leopold
- Amy Goad
- Kristi Yerbey
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