Star Map's Chiari Malformation Adventure

On April 28th our lives changed completely when J, my 5 year old daughter (who we affectionately call "Star Map" online) was diagnosed with a brain condition called Chiari Malformation Type 1 after struggling with debilitating neurological symptoms.

This is a structural malformation of the brain where the brain stem, cerebellum, and cerebral tonsils are too large to fit in the normal cavity of the skull and descend outside of the forum magnum (large oval-shaped opening at the base of the skull) into the spinal canal.

Chiari Malformations can cause a myriad of debilitating symptoms like headaches, neck aches, back pain, body pain, nausea, vertigo, forgetfulness, discoordination to more severe symptoms like blindness, paralysis, seizures etc.

There is no cure for Chiari.

The only treatment currently is decompression surgery, which helps to mitigate symptoms. Decompression surgery consists of permanently removing sections of the skull, C1, and brain in order to help make room and alleviate the pressure on the brain and in the spinal column.

Star Map's decompression surgery will be June 14th.

Star Map is no stranger to fighting for her life. She was born 9 weeks early and spent 40 days in the NICU. She is loving, maternal, gentle, graceful, endearing, intuitive, emotional, spiritual, keen, full of life and the epitome of love in motion. She is the definition of a warrior.

All proceeds from this Go Fund Me as well as two t-shirt fundraisers will help offset costs of Star Map’s Chiari Malformation Decompression surgery, costs related to hospital stays, travel to doctor’s appointments, recovery etc. Any residual proceeds will go to making Adventure Bags for other kiddos embarkng on their own medical adventures!

Star Map carries her Adventure Bag to ALL of her appointments and hospital stays. It includes her Adventure Buddy - Sugar the flamingo, her worry monster, activities, and comfort items. We have been sharing extras with other Adventuerers in the waiting rooms and it has inspired Star Map to want to make full bags for other Adventuerers along the way!

For LOCAL TO FLORIDA people the ordering link for Star Map Adventure Team t-shirts is https://www.milestogocharities.org/.../star-map-youth...! Danielle from @milestogocharities has been incredible in helping with getting this local fundraiser going!

For OUTSIDE of Orlando orders Matt @frvrfierce is going to be the contact and I will be posting that in an update soon!

Kyle from @spurcreative is the incredible branding artist who took Star Map’s original drawing - her signature rainbow - and turned it into this meaningful design that incorporates Star Map’s Adventure buddy - Sugar the magic flamingo!

Be on the look out for "Go Purple for Star Map" days so we can all encourage our Star Map on her Adventure and healing!

THANK YOU to EVERYONE who has been a part of this Adventure. We are grateful beyond words. She is our warrior.