Hello! Many of you know me as Jackson’s mom, but for those who don’t, I want to share a little about why we’re asking for help right now.
Jackson was born with a rare genetic disorder called Wiedemann–Steiner Syndrome, which he was diagnosed with four years ago. Along with that diagnosis came many serious medical challenges, including severe scoliosis, bone abnormalities, fused vertebrae in his neck, sleep apnea, and most critically, a complex Chiari malformation. This means part of his brain is being pushed down through the base of his skull, leaving very little room for his brain and causing dangerous compression of his brainstem.
Over the past year, Jackson’s symptoms have increased significantly and are now affecting his quality of life at just 14 years old. He deals daily with intense head pressure and headaches, dizziness, ringing in his ears, chronic back pain, and fatigue. Things no child should have to live with.
Because Jackson’s case is so severe, he must be treated by a highly specialized pediatric neurosurgeon. Unfortunately, there are no surgeons in Texas who perform the type of surgeries he is needing. By the grace of God, Jackson is now under the care of Dr. Jeffrey Greenfield at Weill Cornell in New York City, one of the leading pediatric Chiari specialists in the country. Jackson is tentatively scheduled for surgery this summer, and this long-awaited procedure could truly change his life.
As you can imagine, this comes with significant expenses. Due to our insurance, we must pay a $6,800 deductible upfront, in addition to flights, an 8–10 day hotel stay, meals, and other unforeseen costs that come with traveling for major surgery.
If it is on your heart to donate, we are deeply grateful for any amount. Every contribution helps bring Jackson one step closer to relief and a better quality of life. He has endured so much in his short time, and he deserves the chance to live without constant pain.
Thank you for reading, sharing, praying, and supporting our sweet boy. We truly couldn’t do this without our village behind us.
Love,
Jackson’s Family
