Donate to help Londyn with her Surgery & Expenses

 

With your support, Londyn and her mom will drive to LA for a life-changing surgery. They will have to stay for a minimum of 2 weeks PER surgery, one for each foot. Insurance will help, but deductibles and out of pocket costs will be expensive. PLEASE consider donating to Londyn to help with the financial burden associated with all medical procedures.

 

Information about Londyn's Disease

CMT disease is an inherited nerve problem. It causes abnormalities in the nerves that supply your feet, legs, hands, and arms. It affects both your motor and sensory nerves. Motor nerves carry signals from your brain to your muscles, telling them to move. Sensory nerves carry sensations like heat, cold, and pain back to your brain. Londyn describes it like this: "My nerve sensations are truly all over the place. Some days I’ll be doing pretty good-no abnormal pains or signals, then on the next day every little thing that touches me hurts. "

 

CMT impacts everyone who has it differently. The most common symptoms include:

-Weakness in your legs, ankles, and feet

-Loss of muscle bulk in your legs and feet

-High foot arches

-Curled toes (hammertoes)

-Decreased ability to run

-Difficulty lifting your foot at the ankle (foot drop)

-Awkward or higher than normal step (gait)

-Frequent tripping or falling

-Decreased sensation or a loss of feeling in your legs and feet

Londyn's experience: "For me, I have struggled with all of these symptoms. As a kid, my parents were concerned about the way I walked and my slowness (age-wise) in running. I would constantly roll my ankles as a kid, and I thought it was totally normal. Even now, it is very common for me to roll or twist my ankle. My feet are severely arched, and I don’t have the ability to simply lift my ankle at will-it is a slow-moving, painful process."

 

Previous Surgery

The hope was that this surgery would help her have more stability and bring normalcy to her life. Londyn had surgery on both of her feet at the same time about 3 years ago. In surgery, the doctor released multiple tendons in her feet, ankles and toes. She was in casts for about 3 months then boots for 5 months, totaling 8 months in a wheelchair. "My mom had to help me do everything, literally everything." She had to complete months of physical therapy to learn to reuse her feet and balance. "During the rehab time, I did constant physical therapy. I had to learn how to walk again. Throughout this entire process, I was in school. I would miss about two or three of the same classes a week, which put me significantly behind. Having to juggle both rehabbing and school, it was too much. I was in eighth grade, and I was really struggling. It was really hard for me to do them both, but I did it. I taught myself to walk and at the same time, I taught myself Pre-Algebra. I will always have my scars from this surgery-both mentally and physically. " Sadly, this surgery did not help and Londyn's feet are actually worse since this procedure.

 

Upcoming Surgery

On July 20th and October 10th, Londyn will have surgery on her feet again. She will have one foot operated on at a time. The hope of this surgery is that she will not have to wear braces daily,  the ability to walk without feeling like she is going to break her ankle and most of all, a prayer that this can be her last surgery. Londyn's mom, Angela, found an amazing doctor, Dr. Glenn Pfeffer, who specializes in foot and ankle orthopaedics specifically for CMT. He watched videos of Londyn's foot movements and enthusiastically agreed to operate on her feet. Dr. Pfeffer describes Londyn's surgery like this, "Typically, wedges of bone are removed from the heel and the big toe side of the foot to create a foot that is flat. The peroneus longus muscle is transferred into the weak peroneus brevis muscle to stabilize the ankle, and the posterior tibial muscle is brought from one side of the leg to the other to help lift up the ankle. Tight tissues are loosened, loose tissues are tightened, and the toes are straightened to fit into a shoe. It all sounds scary I suppose, but this is what orthopaedic surgery is all about. And the results are excellent." Here is Londyn's version, " It is a total foot reconstruction which means they will break the bones in my feet, release most of the tendons, and there will be a minor fusion on my ankle."

 

We appreciate you reading Londyn's story and learning about CMT. Please consider donating if you can, and please pray for a life-changing miracle through this surgery! We will post updates throughout Londyn's journey of surgery and recovery!

 

More on Dr. Pfeffer: https://www.cedars-sinai.org/provider/glenn-pfeffer-2295102.html

Article on Dr. Pfeffer on: https://www.cedars-sinai.org/blog/treating-crooked-unbalanced-feet-caused-by-cmt.html

More information on Londyn's surgery: https://www.cmtausa.org/living-with-cmt/managing-cmt/surgery/how-to-decide-if-foot-surgery-is-right-for-you/