Our fun loving 11-year-old, Knox, was born with a rare condition, Venous Malformation: enlarged & misshapen veins usually contained to a local area (leg, arm, foot, etc.) or lesion/tumor.

Knox’s presentation is a rare 1 in a million case of VM full body from head to toe causing swelling & inflammation, chronic pain, poor muscle tone and joint quality. The most critical area of inflammation is in his airway. The malformations are expected to grow rapidly during puberty, so it is critical to treat.

Knox deals with chronic pain and inflammation daily. He sleeps propped up with multiple pillows and wakes most days with significant joint pain. He has had countless MRI's, a handful of surgical procedures to remove calcified blood clots & shut down especially painful veins, as well as 9 months of an immunosuppressant drug that unfortunately was not effective for him.

Knox has an amazing team of physicians here in Birmingham, but due to the rare and complex nature of his case, treatment for his airway must be done at the Boston Children’s Vascular Anomalies Center.

We have consulted with the Boston team for over 9 years & he had his first airway procedure in Boston 3 years ago. Since then, we have been able to manage treatments in Birmingham, but after a clinic visit to Boston in December, it was determined that Knox needs further treatment to his airways. This time treating the soft palette, trachea and further down.

We recently got word that we have a surgical appointment for June 7th, which is quickly approaching!

The logistics and cost involved are extensive as Knox will be in ICU an estimated 3 days, then inpatient care for an additional 3-4 days.

Any funds raised here will go towards the copays, airfare and lodging.

Thank you for considering helping Knox get the specialized care he needs!

You can also follow along with Knox's journey on our caring bridge site

Knox's Journey

Photo from our clinic visit to Boston in December 2023.