Suede is a vibrant, adventurous and courageous little boy who will be undergoing a big surgery in California on September 29th, 2025. We have created a go fund me to help his family prepare for his recovery as he comes home from surgery.

Suede was born with two forms of muscular dystrophy, Charcot-Marie-Tooth (CMT) disease as well as Lower Extremity Dominant Spinal Muscular Atrophy (LEDSMA). While he faces many challenges as his disease symptoms progress, his most painful and adventure limiting symptom is the clubbing of his feet.

Suedes feet began to club in December of 2023, this is a common symptom associated with CMT disease and is caused when the muscles and nerves in your leg start to atrophy but the tendons are unaffected. The unaffected tendons begin to form contractures which are incredibly painful, drawing the foot inward (clubbed) and changing not only the way Suede walks, stands and gets around in the world but it also slowly begins to pull his bones inward, changing his skeletal anatomy in his feet.

Suede has reached the point where he’s no longer able to stand fully flat on his feet, using the outside portion of his clubbed foot to walk. Floor reactive leg braces and Loftstrom Arm Crutches have been helping him but have now exhausted their limits and he has been needing to utilize his wheelchair more frequently.

Suede is overseen by an amazing multidisciplinary team of doctors and surgeons at Stanford Children’s Medical Center in California. Suede recently returned from a check up at the beginning of July where his team came to the consensus that it was time for surgical intervention to give Suede some much needed pain relief and release his tendons to try to alleviate them from shifting his skeletal structure in his feet.

On September 29th, Suede will undergo double bilateral tendon release surgery at Stanford. During this procedure they will cut and release (extend) his Achilles and Tibial Anterior Tendons in both of his legs. During his recovery from surgery he will be unable to walk for 6 weeks, fully wheelchair bound in casts and dependent on his family for full time caregiving.

His family is ready for the challenge and the relief that will come from this surgery for Suede! They are requesting support from the community for financial assistance for expenses associated with surgery such as travel and lodging as well as daily living expenses while in California as Alohacare has denied travel for Suedes surgery due to it being an “out of network specialist”, while we appeal this decision with Alohacare, the surgery cannot wait, further delay could cause irreversible damage to his bone structure due to the clubbing of his feet.

Mahalo Nui Loa for your consideration and support for Suede as he undertakes this next step in his journey!