John David is a 10 year old boy with a face full of freckles and a huge smile! For 5 years John Jr. has been in had severe back and leg pain with headaches. The family went to many doctors and specialists to try and find the cause. After many misdiagnosis and watching their child in pain opening his Christmas gifts 2013 they decided to reach out to children hospitals all over the country who specialize in pediatric neuro radiology/surgeon. A MRI with sedation was performed early February and showed a possible AVM ( Arterial Venous Malformation). The family was rushed by ambulance to Shands Hospital in Gainesville, Flordia where again they hit a wall of no answers. A few months later back at home a Miami Children's a neurosurgeon reimaged the area and agreed a vascular malformation in the spine. They sought out specialists in Baltimore, Boston, Pheonix and New York. Within weeks they were on their way to Boston to meet with three different specialists who made them feel there was a true understanding of this rare disease. After an angiogram at Boston Children's they hit another wall and were unable to find the malformation. Back to Loxahatchee, FL with frustration and fear and no answers as to where to turn to next. They continued to seek out many specialist who put John Jr. on many different meds for each symptom with no real answers. Out of the blue Johns Hopkins Baltimore, MD called and after reviewing the films suggested another procedure, a venogram. The family was hopeful this was the answer they were looking for. They packed again to seek treatment across the country. Once at Johns Hopkins they began a brain MRI which revealed a dva in the right front lobe, ct scan showing 4 nodules in lungs, and an echocardiogram bubble study positive for lung shunting. He then had a venogram which showed the malformation from the renal vein to the spine where they placed 3 coils. Since then he has been attempting Physical therapy to regain core strength in legs and spine. Gradually symptoms began to reoccur with pain in legs and back along with another new problem that lead him to be admitted to picu a "thyroid storm" causing tachychardia. Basically Florida health facilities do not specialize in this area so the family is headed back to Johns Hopkins Baltimore, MD for more imaging and an angiogram and to meet with many specialist. First concern is to rule out an avm in brain causing neurological issue, revisiting the vascular issue in the spine and review the thyroid nodules. John David is on many medications to control tachycardia, thyroid and pain issues. They have had to lease an apartment for an unknown amount of time in Baltimore. John Sr is a Palm Beach County Fireman who is taking a FML leave of absence. Thankfully Jennifer is a stay at home mom who has been able to care for her son at home. She is the one who like many moms follow their gut and reach out to anyone who will listen to find a cause for her son's discomfort.
Medical costs are building and traveling back and fourth across the country is begining to take a toll on this family. Please consider helping them with one less thing to worry about.
I know John and Jen and their entire family would like me to acknowledge all his fellow Firefighters, neighbors and friends who have supported them during this tough time by working for him or offering to watch over their home (pool, lawn, dog etc) Some have had to transfer their family from one facility to another. They are blessed and thankful for all of you!