Six-year-old Joel Ruiz has learned to live with this genetically rooted neuropathy that affects the peripheral nervous system, causing progressive muscle weakness and atrophy. His parents, Marta Sánchez and Alan Ruiz, aim to increase visibility, normalize the condition, and accelerate research into the disease, which affects one in every 2,500 people.
“"It started with his feet and then moved to his legs. It seems to have stabilized, and now it has gone directly to his hands. He does have strength, but he cannot manipulate things well. He cannot open a bottle."
The family became alarmed when Joel was two years old due to constant stumbling and lack of stability. After a diagnostic process involving the L'Escala Primary Care Center, the Figueres hospital, and finally Vall d'Hebron, they received the CMT diagnosis. This pathology has no cure or curative treatments, and the boy follows palliative treatment for pain.
To maintain stability and prevent foot drop, Joel uses special braces, with shoes manufactured in the United States that can cost up to two hundred euros. For long journeys, such as going to CEIP Empúries school, he requires an electric wheelchair. The parents contacted the Women's Race organization for support, a request that was accepted with great joy.
The L'Escala Women's Race, which has already raised over 60,000 euros in eight previous editions for various causes, will feature a 5 km route. The start and finish will be at Platja de les Barques, and the circuit will pass through the archaeological site of Empúries, offering zumba activities and chocolate at the finish line.
