Reilly Brown may be small, but his personality is anything but. You might not know by looking at him, but Reilly has Proximal Focal Femoral Deficiency or PFFD.
“It affects the pelvic area and the bones in the leg. His femur bone is shorter,” says Stefanie Brown, Reilly’s mother.
Reilly’s parents say his condition has left him needing multiple surgeries until he stops growing. Doctors say that’s typically around the age of 16 or 17.
Reilly’s had his first surgery when he was just a year old.
"I was blubbering mess all the time. I was crying because I felt it was hard to explain to a one year old what they were going to have to go through,” says Brown.
Since then he’s had a half dozen more, including limb lengthening surgery, where 9 pins were surgically placed in his bones.
"Limb lengthening is basically you divide the bones, just like breaking the bone, you osteotomies the bone, you let mother nature start to heel it and then you start pulling the bone apart very slowly,” says Dr. Standard.
Dr. Shawn Standard is the head of Pediatric Orthopedics at the Rubin Institute at Sinai Hospital in Baltimore. He is also Reilly’s doctor. Dr. Standard says Reilly has done really well through all of his surgeries.
"I tell mom and dad he’ll play baseball, he’ll play football, hockey, basketball, whatever he wants to do,” says Standard.
Surgery is not just tough on a child though. The stress and piling up of bills can be hard on any family. The Brown’s insurance covered most of the surgeries costs, but the physical therapy sessions were capped at 35 sessions, not nearly enough. Reilly needed closer to 70.
That’s where the ‘Save a Limb’ fund came in. The fund was established in 2001 and supports in the fight to save limbs from amputation. The fund provides financial assistance to families like the Brown’s.
“It's a wonderful fund that tries to bridge the gaps where insurance companies don’t pay for lots of travel and therapy,” says Dr. Standard.
Stefanie Brown says, “We're very thankful that they were able to help us out with that, it helped us a great deal and they do that for a lot of families, not just us."
Because of all the support Save a Limb has given to the Brown family, they wanted to give back. Their latest fundraiser is a raffle for tickets to a Ravens game including a parking pass. For more information on the fundraiser at to follow Reilly’s progress you can follow him on his Facebook page, Reilly's World.
