October 2021 AMCer

If you would like to help an AMC family like this one, click here to donate to Helping AMC Families Incorporated

Hunter Willie

My age: 6 years old

When I grow up: I want to be a scientist and a doctor

My favorite superhero: Iron Man

Number of surgeries to date: Seven

Assistance provided: Lodging expenses for extensive medical travel

An extended stay in Florida

Dr. Feldman with Hunter

Hunter was diagnosed with Arthrogryposis Multiplex Congenita (AMC) at birth.  Affected in all four limbs, he was only able to move his head. Hunter began his first round of casting when he was just one week old. To receive medical care, Hunter’s family traveled for four hours, twice a week, for four weeks. Ultimately, Hunter’s mother was told that there wasn’t any chance for him to walk.

Hunter had multiple upper limb surgeries over the years and became more mobile over time, surprising everyone when he started standing on one knee and one foot! He eventually started getting around in this position. Hunter’s mom found AMC Princess Ana & Nana on Facebook. Reaching out, they discussed an orthopedic surgeon that Ana would be seeing in Florida. After seeing how successful Ana’s surgery was, the family decided to get Hunter an appointment for a consultation.

Meeting Dr. Feldman at The Paley Institute in West Palm Beach, FL was a dream come true. Dr. Feldman said without hesitation, “Hunter will walk” and scheduled surgery within the same year. Hunter had major double leg surgery with Dr. Feldman in 2019 and about four weeks after surgery, stood on his own two feet for the very first time! A year later he had additional surgery on his ankles, after which Dr. Feldman said Hunter had a deformity in his right foot, causing a curve which could not be addressed during surgery. Nothing more could be done at that time so Hunter started working really hard in physical therapy, getting better at walking in his braces and with his walker; however, the curve in his foot made it hard for him to balance and walk long distances. 

Despite the challenges, Hunter continued fighting for mobility and in June 2021 took his first independent steps!

In August 2021, Hunter had to return to Florida for another foot surgery. The process started with serial casting and the subsequent surgery was successful. However, Hunter had to have pins placed in his foot while healing, which doubled his recovery time. He will be completing his recovery in Florida on October 22nd, 2021. The family was not prepared for the extended stay but the smile on Hunter’s face and his excitement of walking makes all the hardship worth it.

Helping AMC Families is thrilled, through the support of our amazing donors, to be able to assist Hunter and his family with the outstanding lodging expenses. Helping AMC Families works directly with lodging providers to pay balances due for the long trips away from home frequently required for AMC families, who must travel long distances to obtain the best medical care for their children.

If you would like to If you would like to help an AMC family like Hunter’s,
click here to donate to Helping AMC Families Incorporated

Nana : Would you rather be rich or kind?

Ana : Kind

Nana : Why?

Ana : Because kind people do beautiful things.

– AMC Princess Ana & Nana

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