Jose has a severe case of Apert Syndrome, a very rare genetic disorder in which the seams between the skull bones close earlier than normal. The cranial defects cause major concerns for brain growth and development. Jose is at high risk for stroke or blindness due to the increased cranial pressure caused by the shape of his skull. Many of you already know Jose and are aware of the level of care and medical intervention that has been required in the past in order to keep Jose healthy and safe.
Rebekah and Chris, Jose's adoptive parents, have been advised that Jose will require three separate surgeries over the course of the next year in order to improve his skull abnormalities and hopefully decrease the risk of blindness and/or stroke. Their surgical team in Atlanta can not perform these highly intricate procedures. They have been referred to Dr. Jesse Taylor and Dr. Scott Bartlett at the Children's Hospital of Philadelphia. Dr. Barlett is the President of the International Society for Craniofacial Surgery. Dr. Taylor is a member of this group and in addition to teaching at U Penn and performing surgery, he conducts research in the area of techniques for bone engineering using stem cells. Bone engineering is vital for Jose as there are so many significant gaps in his skull. As you can see, Jose will be in the care of the best of the best in the world.
Jose's first surgery (scheduled for March 26, 2014) will pull the back of his skull out, relieving the pressure that his constricted skull has placed on his brain. The second surgery will remove all of the metal from his skull...most of us know that these screws and bolts and plates have been a major issue for Jose as they continue to break through the surface of the skin. Once the metal is removed, the surgeons hope to use portions of his rib and hip bones to cover the defects in his skull. The third surgery will pull his face forward, a repeat of a surgery he had in 2008.
Each of these surgeries will require a minimum three week stay in Philadelphia. As you can imagine, getting the surgeries covered by insurance out of state is a huge task. Please pray that the insurance company will see the urgency and need for the procedures explained above. Another major source of stress for the family is covering the cost of the hotels, food, gas, airline tickets, incidentals and other unforseen expenses that will occur during these three stays in Philadelphia.
The goal is to raise a minimum of $5,000 per trip to help cover these expenses for the family.
Please share this page with everyone you know. To know this sweet family is to love them all. Jose has quite a fan base. I know we can do this! Jump on the train conducted by this precious engineer and help us create a community of care for his family!
Can you support Jose and his family at any of the following levels?
$5 - vending machine snacks/toiletry items/special treat from gift shop
$10 - breakfast
$15 - lunch
$15 - dinner
$40 - meals for one day
$40 - one day of hospital parking
$50 - one tank of gas
$120 - one night at the hotel
Goal 1: $5,000 by March 15, 2014
Goal 2: $10,000 by June 15, 2014
Goal 3: $15,000 by August 15,2014