Medicaid Matters for Kids Mondays - Jude

Speak Now for Kids is celebrating Medicaid Matters for Kids Mondays with posts highlighting the importance of Medicaid in children’s access to health care. This week we revisit Jude, a Speak Now for Kid’s Family Advocacy Day alum and current patient at the Colorado Children’s Hospital.

Jude seems like your typical first grader. He likes to have fun on the playground, loves school, and is an avid reader, a jokester and a keen video gamer.

But Jude is anything but typical; he has been diagnosed with hydrocephaly, epilepsy, autism, brain tumors and moyamoya — a rare condition associated with neurofibromatosis type 1 (NF1), in which arteries at the base of the brain become blocked resulting in a high risk for stroke.

Jude sees many specialists and doctors. His family relies on Medicaid to help offset the high cost of medical care and prescriptions. He and his mom, Alita, came to Washington, D.C. with the Children’s Hospital Colorado in 2017 for Speak Now For Kids Family Advocacy Day. We caught up with Alita to find out how Jude is doing today.

We learned that during a recent routine MRI, doctors found a lesion on his brainstem. While very small, its location is blocking the flow of cerebral spinal fluid (CSF) and causing hydrocephalus. A neurosurgeon, Dr. Wilkinson, will perform a delicate procedure that will allow the CSF to flow around the tumor. Unfortunately, Jude also had a small stroke/ transient ischemic attack (TIA) back in January. But he’s doing ok and is being closely monitored by his excellent care team.

“Medicaid has been so important to our family,” Alita noted. “I am a single parent working in early childhood education. I recently put myself through school for my first bachelor’s. The out-of-pocket costs for Jude's care would be devastating if he weren't on Medicaid. His current prescriptions alone cost $1,300 per month. In 2017, Jude had five MRIs, all of which were accompanied by general anesthesia. Since his stroke in January, he has had over 25 appointments at Children's Hospital Colorado. I simply can't imagine what our life would be like without Medicaid. Having it allows me the peace of mind that comes when you know that —despite life-threatening diseases— Jude will always receive the care he needs.”

Jude is an amazing kid and continues to make progress with the support of the weekly physical and occupational therapy appointments. He’s currently teaching mom how to play Minecraft! How cool is that?

“Despite all these conditions, Jude is like the funniest guy in the universe! He has this amazing outlook on life. He’s having a great school year and loves his first grade teacher, Ms. Leahy.” Alita proudly explained.

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