Medical Craniosynotosis

On July 9th of this year, my Grandson Brody was born at Tufts Medical Center in Boston, Massachusetts..  Brody was born with Craniosynotosis. He has multiple suture closure which is making his head appear like a cloverleaf. His condition is rare and severe. Recently his condition became more urgent when his Mom noticed his head getting larger. Multiple cranial surgeries will need to take place as well as cranio facial reconstructive surgery and possibly eye muscle surgery. For those of you who don’t know what Craniosynotosis is, it is a rare condition in which a baby develops or is born with an abnormally shaped skull. It happens as a result of one or more of the infant's cranial sutures (cracks in the skull) fusing too early. Normally an infant's skull is made up seven bones, with gaps (cranial sutures) between them that do not fuse until the child is approximately two years old, this allows their brain to grow and develop. It happens 1 in 2,000 babies born. .  Brody’s first round of surgeries will begin in a couple of weeks and will be the early endoscopic release for craniosynostosis. Endoscopically released sutures require helmet therapy for at least six months post-operatively to help mold the skull into a normal position. This will help relieve pressure until he is old enough around 6-8 months old where he will get his second round of surgery known as cranial vault remodeling.

Surgery will need to be performed in Boston.  My Daughter and son-in law have had to travel to Boston multiple times  a week since prior to his birth.   They also have a 17 month old son, Lucas, who they need to find care for when they are in Boston.  , My Son-In law is the sole provider for the family as my daughter takes care of the boys.  They are struggling with the costs of traveling in and out of Boston, parking, feeding their family and worrying about paying their rent so their family can be safe.  The amount of time taken off from work is jeopardizing their ability to pay the bills.  In addition, although Brody has Mass Health Insurance, we are unclear of the amount of bills Mass health will not cover.   

We are all so grateful and thankful for all your prayers and support in this time and are now reaching out for any help you can provide to lessen the stress of this medical event, keep a roof over their heads, food and medical support so they can hold their son close and help him through this long healing process.  Any support you can provide will be used solely on helping this family through this and will be much appreciated.   Thank you all so much  - with love,  Brody’s family