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Luca’s CMT Story
Luca's story -
March of '22, almost a year ago now, Luca brought to my attention that he was having pain in his feet. I noticed that he has a very prominent bone that sits on the top of both of his feet. It was always red,swollen and even bruised. He disliked wearing socks and shoes and even putting his feet in water. (Says it hurt) I made an appointment with his pediatrician not really knowing what steps to take next.
Luca was a late walker, (started walking around 18-19months) he was very wobbly and fell a lot. He also struggled with dressing himself,putting his socks and shoes on, along with walking long distances.
When we saw our pediatrician she advised that she has never seen feet quite like Lucas's with him being so young. She said it was a rare instance and sent a referral for Luca to see an Orthopedic. Thankfully, we did not have to wait long! We were able to get in with our Orthopedic and had X-rays done and he watched Luca walk,run and do simple tasks. Which for Luca the simple tasks were difficult. He mentioned to us that Luca possibly has CMT. Charcot- Marie Tooth Disease. At this moment in time, I had absolutely no idea what this meant, or what it intailed. Our Dr explained CMT to us and made us an appointment to see a Neurologist.
As a mother; you have all of these thoughts going through your head. What does this mean? What will Luca's future be like?
We anxiously awaited the appointment with our Neurologist. We were met with a team of doctors who all evaluated Luca on his walking,jumping,running and even his fine motor skills. They mentioned the CMT to us again as a possibility. They referred us to genetic testing. (It felt like years before we received the results).
I remember the day I received the phone call from his Dr. It felt like my world had shut down. I was scared,I felt alone and more importantly I was scared for Luca.
Thankfully we have an amazing teams of drs. Luca is currently receiving Physical Therapy and Occupational Therapy.
They recommend Luca try custom molded shoe inserts to help his balance. Once we learned this was not working we were recommended to Luca having SMO's. Luca was able to be casted and even was able to pick a pirate them for his braces!
Luca has a long road ahead of him, but with the help of our family and friends I am praying the CMT foundation is able to help Luca and also my two other sons who also inherited this disease.
There is currently no cure for Charcot-Marie Tooth Disease, but with your help I hope we can change that!
Please take time to read about CMT, please educate and learn about this rare genetic disorder. Please help Luca, and his brothers and all others struggling with CMT to find a cure. ?
Charcot (shahr-KOH)-Marie-Tooth disease is a group of inherited disorders that cause nerve damage. This damage is mostly in the arms and legs (peripheral nerves). Charcot-Marie-Tooth disease is also called hereditary motor and sensory neuropathy.
Charcot-Marie-Tooth disease results in smaller, weaker muscles. You may also experience loss of sensation and muscle contractions, and difficulty walking. Foot deformities such as hammertoes and high arches also are common. Symptoms usually begin in the feet and legs, but they may eventually affect your hands and arms.
Signs and symptoms of Charcot-Marie-Tooth disease may 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 (footdrop)
- Awkward or higher than normal step (gait)
- Frequent tripping or falling
- Decreased sensation or a loss of feeling in your legs and feet
As Charcot-Marie-Tooth disease progresses, symptoms may spread from the feet and legs to the hands and arms. The severity of symptoms can vary greatly from person to person, even among family members.
Luca’s CMT Story
- Joe Hogan $6,327.68
- Jodi Balog $5,116.20
- CL Chelsea Layton $4,947.70
- Lily Sander $3,425.00
- Karina Wilgeroth $1,194.00
- Harold Rosenblume $1,015.50
- Monica Thomas $838.80
- Anna Gilthorpe $324.10
- Lauren Fairchild $270.00
- Miron Hall $187.80
- Shelley Reid $168.90
- Chloe Spanjersberg $159.00
- LA Lucy Alphonse $106.00
- Allison Taylor $97.70
- Kaileen Selig $81.80
- Jill Price $80.00
- ML Megan Lee $40.00
- Tara Haik $25.00
- Shanae Fernandez $2.12
- SP Shubha Pallavi $0.00
- Ann Fairchild $0.00
- SH Shayla Hammock $0.00
- AB Angie Bratton $0.00
- Ashley Miller $0.00
- Dennis Perez-Lopez $0.00
- MK Mikayla Karkoski $0.00
- Noa Sumner $0.00