Charlotte

Congenital Femoral Deficiency, Fibular Hemimelia, Proximal Femoral Focal Deficiency Massachusetts Dr. Standard
In a Facebook post last year, Charlotte’s mom Nellie shared that at a bike ride event for children, she prayed that her daughter Charlotte could make it for a loop or two of the ride. Just a year earlier, Charlotte couldn’t even ride a bike. Charlotte wound up completing at least 20 loops! “The emotional part came as kids began dropping out. The ride lasts an hour, and Charlotte kept going… past kids who’ve been riding for years, with two legs the same length and no surgeries. She rode for the WHOLE HOUR! … Today was a GOOD DAY! A day you dream of when you have a child who faces challenges. She went beyond my wildest expectations…. I couldn’t be more proud of her strength, resilience, and overall attitude!”

Nellie shares that since Charlotte began treatment at the International Center for Limb Lengthening, “Our daughter’s life has improved tremendously! She had her first surgery (SUPERankle) at 13 months old. She is now 7, and we’ve been so happy with her mobility and her ability to participate in daily life. She does everything (and more) her peers do. There are always periods of rehab after surgery, where things slow down, but each surgery has ultimately improved her life. Her biggest procedure, lengthening her femur and tibia, took nearly nine months, but seeing her progress out of the foot-on-foot prosthesis and into a lift changed her mobility dramatically.”

“We have been so impressed with Dr. Standard and his staff. We are in regular communication with [Physician Assistant] Allison Lynn over anything that may come up. She consults with him and responds to us quickly. Even though we are a plane ride away, I have never felt the need to have a “local” orthopedic surgeon to deal with minor issues. We have sent videos, pictures, X-rays, etc. when needed, and we always get a quick and reliable answer to any issue…. Dr. Standard gave us his cell phone number during the lengthening, and we have had to use it twice. Once, when our daughter was experiencing nerve pain, Dr. Standard gave us a quick solution and told us he would see her the next day in clinic. (We were in Baltimore for the lengthening.) Another time, our daughter slipped shortly after surgery and fractured her tibia. We texted Dr. Standard on our way to the ER, and he was communicative and able to respond with options. We feel much ‘closer’ than a plane ride away, and I know that Dr. Standard and his staff are ‘on call’ for us.”

When asked what she would share with a parent considering having their child receive treatment at the International Center for Limb Lengthening, Nellie responded, “I would tell them how communicative and responsive the staff is, and how we feel our child is well cared for. I appreciate how Dr. Standard knows that we have a life and tries to work around important events when planning surgeries and other treatments. I would also mention that you need to be flexible. Twice, we have had to return to Baltimore for a week at a time to do intensive physical therapy. Our daughter has had one unplanned surgery. However, each time, I have been grateful we followed through, as her mobility increased. She was better off having returned and completed the PT/surgery. I would also talk about the Hackerman-Patz House, and the fact that we are surrounded by so many families who are going through the same things. These people have become our good friends, and they are the ONLY people who truly know what we are going through. We have sat with each other through good and bad news, both in person and via email/Facebook. If we had stayed local, I think we—and more importantly, our daughter—would have felt very alone. Our daughter knows there are kids like her out there, and she LOVES coming back to the Rubin Institute….which surprises us because we are usually coming back for surgery or treatment! It is a happy, positive, place, and we are so grateful.”