Help Ferris Go to Boston!

Hi everyone,

Our son has been accepted into Boston Children’s Hospital for their Aerodigestive Center in 2025. This is fantastic news for him and brings us to happy tears! While Ferris has made significant strides in the last few months developmentally since his nissen and esophagus surgery, there is still so much mystery around his respiratory function/digestive tract that to this day the medical professionals around us can’t fully explain what is happening.

During this trip to Boston, we plan on doing more imaging/testing that has not been available to us locally. We see this visit as an opportunity to gain a better picture of what’s going on in his body, helping us make more informed medical decisions on Ferris’ behalf. Without this information, the other options available to us can have permanent side effects.

With the new year upon us, our health plan deductible/out of pocket maximums resets, and that combined with an out of state hospital trip poses a significant financial challenge. This visit will require us to embark on a 1,000+ mile road trip and make a series of rest stops and overnight stays due to Ferris’ unique medical needs and to ensure his comfort.

About Ferris

As many of you may know, Ferris spent a turbulent 208 days in the NICU at St. Louis Children’s Hospital. Ferris was born with arthrogryposis (affecting his lower extremities mildly), hypotonia, trouble swallowing and has severe obstructive sleep apnea. He is 100% tube-fed and requires oxygen and a pulse ox monitor at night. Our son is largely undiagnosed, so he presents with a variety of health challenges and symptoms, but no underlying cause can explain it. He does live with a rare spontaneous mutation that is not well researched, but may have an impact on his condition.

Our incredible AMC family/community helped us advocate for jaw distraction surgery with our care team, and so at 3 months old Ferris got that life-altering surgery. The procedure brought his jaw forward to open his airway, and that improved his breathing and significantly reduced severe oxygen desaturations. This was the turning point for us to be stable enough for discharge just a few weeks before Christmas in 2023.

Despite these challenges, his wildchild spirit shines bright, and we are committed to doing everything in our power to give him the best possible care. From the bottom of our hearts as parents, thank you for your kindness, generosity, and for being part of Ferris’ journey. Any help you can provide is much appreciated. We truly believe this trip will give him the best chance to thrive.

Love,

The Logullo's