Join Jack's Journey - Life Changing Surgery

Dear Friends and Family,

We're reaching out to you on behalf of our amazing nephew, Jack, and his superhero parents, Ashlee and Kenny.

There's exciting news - Jack is scheduled to undergo an incredibly promising surgery in July at Johns Hopkins All Children’s Hospital in St. Petersburg, FL. This new procedure will address a condition he was born that causes his airway to collapse when he exhales. The condition worsens with frequent illnesses that make breathing difficult when he plays, eats, coughs, etc. His increasing and worsening chronic infections are weakening his trachea, trapping common illnesses, which leads to severe respiratory infections. Jack has been experiencing this vicious cycle for the past 2.5 years, but now there is hope! The surgery will reinforce the area of weakness to keep Jack’s airway open, allowing him to breathe freely for the first time in his life. The benefits are significant, almost instant, and permanent. However, this intensive process will take 3-5 weeks, including a 7-10 day inpatient recovery.

For those of you who have met our nephew, Jack, you probably know him as an incredibly engaging, energetic, and curious little guy who commands your attention!However, you may not know that this incredible kid fights daily to enjoy simple activities like school, playtime with friends, holidays, vacations, dance, and sports. While he's 100% present when he's able to participate, his health challenges often keep him from being able to attend his favorite activities regularly.

Jack was born two months early with a rare condition called TEF/EA (tracheoesophageal fistula with esophageal atresia), often referred to as "Born Unable To Swallow." In short, his esophagus didn’t connect (like a freeway without an overpass or Oakland and San Francisco without the Bay Bridge), and his airway split connecting to his stomach. At just hours old, Jack took his first solo trip on a care flight to Los Angeles. This was the beginning of Jack’s 3.5-month stay in the NICCU at Children’s Hospital Los Angeles. His condition required two operations (the first at two days old and the second at eight weeks on his due date). Since then, Jack has endured eight additional surgeries and procedures before the age of four, and at five months old, he began two years of OT and PT to support his development and recovery.

Unfortunately, children with EA/TEF, like Jack, often face chronic and severe respiratory illnesses, including recurrent pneumonia, fevers, persistent cough, and difficulty breathing. These issues have led to countless sicknesses, an inability to attend preschool regularly, long periods of staying home, and keeping the family from everyday life and enjoying time with family and friends. Simple colds escalate into serious symptoms, leading to ER visits, hospitalizations, and extended recoveries. There are times when he doesn't even have a week of health before the subsequent illness hits. Despite seeing several specialists and seeking advanced treatments, the options seemed limited to managing symptoms and living with the condition as best as possible.

Ashlee and Kenny have been incredibly resilient, embracing every opportunity for Jack to participate in everyday life when he’s healthy enough. They wake up every day and go to bed every night, unable to ever really plan their days because there’s a strong chance Jack will have to miss preschool or another planned activity while they manage his illness, just trying to keep him out of the hospital. They have lived on their tiptoes for five and a half years, but this new surgery promises to transform Jack’s life, allowing him to breathe freely and reducing his illnesses, paving the way for a healthier and more active future!

While insurance may cover part of the surgery, Ashlee and Kenny will have significant out-of-pocket costs, and lodging, food, and travel expenses will not be covered, and medications are costly. Ashlee and Kenny will be the last to ask for help, so Josh and I are reaching out on their behalf. If you can help, any donation is appreciated, including your time —helping with their dogs, watering plants, or providing meals upon their return would be wonderful.

We know the circle of love surrounding Jack, Ashlee, and Kenny reaches far, and we want to have the opportunity for everyone to support them. We will follow up with opportunities to volunteer as the surgery date approaches, but in the meantime, if you can contribute to Jack's journey, please click on the link below.

Thank you all in advance for being a part of Jack's journey...Your support means the world to our family!!!

With so much love and appreciation,

Mackenzie and Josh