Walker is almost 2 years old and already the strongest person we know.

He spent the first 7 months of his life in the NICU. Since then, he has endured 8 surgeries, is TPN and G-tube dependent, and has faced more than most adults will in their entire lifetime.

As a newborn, Walker developed NEC (necrotizing enterocolitis) — a life-threatening intestinal infection that can destroy parts of the bowel. He survived it twice.

He has also experienced two separate volvulus events — when the intestine twists on itself and cuts off blood supply. This is a surgical emergency that can quickly become fatal if not treated immediately. We have lived through that fear more than once.

Walker also has gastroparesis, small kidneys with hydronephrosis, mild to moderate permanent hearing loss, swelling in his hands, feet, and face since birth, and a rare genetic condition involving the ITPR1 gene that doctors believe may be an atypical form of Gillespie syndrome. (yes, that is also our last night. No it’s not a joke. We are waiting on the Hallmark movie deal any day now.) ☺️

Despite everything, Walker smiles. He loves Finding Nemo and reminds us daily to “just keep swimming.”

In April, we are traveling to Children’s Hospital of Philadelphia (CHOP) to undergo advanced lymphatic testing, including a lymphangiogram. CHOP has one of the top programs in the country for complex lymphatic disorders, and we are hopeful this will bring long-awaited answers.

Traveling with a special needs / medically complex child comes with significant costs — gas for a 2 day drive, multiple hotels, food, extra medical supplies not covered by insurance, medical bills, and time away from work for Kyle. With our recent loss of Medicaid for Walker - We are setting a goal of $2000 to help offset these expenses so we can focus fully on his care.

If you feel led to donate, share, or pray for our family, we are deeply grateful for each and everyone of you. Every bit of support helps us continue fighting for answers for our sweet boy.

Thank you for standing with us.

His fight is our fight!

#WalkerStrong

Just keep swimming