Help Amplify Jack's Future With Life-Changing Surgeries

Bryan and Fernanda Fodness is organizing this fundraiser.

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Dear Friends and Supporters,

We are the Fodness Family - Bryan (Sioux Falls, SD), Fernanda (Sao Paulo, Brazil) and Jack. We currently reside in Las Vegas, Nevada, USA. We are a very active family that cherishes the outdoors and finds joy in life’s little pleasures.

Our life was forever changed when our beloved son, Jack was born in October 2018. He is a bright and resilient boy who was born with a rare group of congenital disorders called Oculo-Auriculo-Vertebral Spectrum (OAVS) which commonly affects the eyes, ears, and spine. Each case varies widely; however, it can affect many other parts of the face and body.

Jack's case specifically included the following conditions:

Bilateral Microtia (Undeveloped Ears)

Bilateral Atresia (Undeveloped Ear Canals)

Heart Defect (Double Aortic Arch)

Anomalies of his ribs and spine

Facial Palsy

Recessed chin and jaw

Jack spent his first 21 days of life in the Sanford NICU in Sioux Falls, SD undergoing numerous tests. When he was finally dismissed from the hospital we were sent home with a long list of therapists and specialists that Jack would need to follow up with for the foreseeable future. Thanks to the South Dakota Birth to 3 program Jack was able to receive occupational, physical, and speech therapy up until his 3rd birthday. Currently, the anomalies of his ribs and spine are not an immediate concern, and the recession of his chin and jaw have improved with age. Facial palsy continues to cause challenges in Jack's speech and facial expressions.

Due to his atresia (lack of ear canals) Jack has maximum conductive hearing loss and requires bone anchored hearing aids (BAHA) to be able to hear. At 3 months of age Jack was fitted with his first hearing aids that he wore on a soft band.

In March 2019, Jack underwent a successful surgery at the American Family Children's Hospital in Madison, WI, to repair a double aortic arch in his heart. Periodic monitoring by a cardiologist is still required.

Solutions to Jack's current challenges:

Ear Reconstruction: The first and second surgeries will be performed by the renowned Dr. Sheryl Lewin in which she will create and implant two new ears for Jack. Dr. Lewin specializes in Microtia, using a far more advanced PIER (Porous Implant Ear Reconstruction) technique which utilizes a polyethylene material commonly used in many other facial reconstruction procedures. This material has the benefit of allowing the patients tissue to infuse and bond with the porous material ensuring sufficient blood flow and improving the overall health and durability of the implant. We have placed a deposit to secure Jack's first surgery in July 2025.

BAHA Implants: The third surgery involves placing a more discreet and sleek bone-anchored hearing aid called Osia by Cochlear directly into Jack's skull. This innovative magnetic connection vastly improves sound quality and stability, maximizing Jack's potential for learning and developing relationships.

Follow-up Procedures: Jack may require additional surgeries for adjustments, fine-tuning, and or unforeseen circumstances.

Obstacles:

These specialized surgeries at the Cove Surgery Center in Torrance, California, come with significant costs. Out-of-pocket expenses for the surgeries alone are estimated between $20,000 - $100,000. Travel, accommodation, and time away from work will add to the financial burden. We will require at least 10 separate trips to Torrance to complete his surgeries and follow up care.

How you can help support our journey:

Donate: Every contribution, no matter how small, makes a difference. Your donation will directly impact Jack’s life and future.

Spread the Word: Share Jack’s story with your friends, family, and social networks. The more people who know about our cause, the greater the support we can receive.

Pray: We believe in the power of prayer!

Jack’s Spirit:

Jack is an energetic, courageous, boy who dreams of a future free from limitations. He has expressed a strong desire for these surgeries to improve his hearing and overall well-being. Although Jack has done a great job responding to inquisitive children regarding his appearance and hearing aid, we as parents have a growing concern of future bullying and exclusion.

A note from Jack's parents:

Our life with Jack has been an incredible and eventful journey filled with God's blessings. The next couple years will set the stage for the rest of Jack's life, and we whole-heartedly believe these surgeries are crucial in equipping Jack with the physical, emotional, and social tools he needs to thrive throughout his life. Thank you for your kindness, compassion, and generosity. Together, we can make a lasting impact on Jack's life.