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Child needs assistance for surgery

By Leigh Anne Butler

Amanda Bovard’s two-year old son, LJ, was diagnosed when he was only four-months-old with hydrocephalus, a condition where excess fluid builds up in the brain.  When diagnosed LJ’s condition was linked to a rare arteriovenous malformation (AVM) called Vein of Galen Formation (VOGM).  VOGM is a rare blood vessel abnormality inside the brain where arteries in the brain connect with veins instead of capillaries which causes a rush of high-pressure blood into the veins.

Since his diagnosis, LJ has had three embolization procedures to help block the abnormal blood flow in his brain.  His last procedure was in December and helped stabilize his head swelling for a few months.  Soon after that procedure, his doctor at Children’s Hospital in Birmingham relocated to another state, which left them without a doctor in the state of Alabama to treat LJ. 

LJ was referred to Dr. Darren Orbach, the head of the pediatric neurointerventional radiology department at Boston Children’s Hospital.  Dr. Orbach is a leader in the treatment of pediatric AVM disorders and has patients referred to him from around the world.

LJ has his initial appointment with Dr. Orbach on Dec. 4 in Boston.

“Dr. Orbach has accepted us and would like us to come to Boston to do an angiogram and possibly another surgery,” Bovard explained.  “The problem is getting there.” 

Bovart’s sister, Kareena Teaney has set up a GoFundMe page to help raise money so LJ and his family can make the trip to Boston in December to meet with Dr. Orbach.

“His hydrocephalus is causing his head to grow,” Bovard continued.  “In fact, his head is so large that we have to buy him men’s hats.  His neurosurgeon here is getting concerned that if we don’t get this shut down soon that there are going to be negative effects on our son.”

If you would like to help LJ and his family with travel expenses you can donate through the family's GoFundMe page.