Tristan’s Upcoming Surgery

We all know the saying “It takes a village to raise a child”. Well, for the first time as parents, we are calling on our village.

As many of you know, Tristan was born with a very rare genetic condition called Sturge Webers Syndrome. This condition presents itself in the form of a “port wine stain” birthmark adorning the left side of Tristan’s face. This birthmark is composed of an abundance of capillaries just beneath the skins surface accompanied by abnormal blood vessels on the brain. While most “port wine stain” birthmarks are harmless, people affected by Sturge Webers Syndrome suffer from a variety of neurological symptoms. Tristan is affected by the following symptoms: Seizures, permanent muscle weakness, developmental delays and cognitive impairment, glaucoma (increased pressure within the eye) at birth, buphthalmos (enlarged bulged eye), and Migraines.

Tristan is only 22 months old has already undergone 6 procedures to reduce pressure in his eye due to glaucoma. He spent his very first Christmas in the PICU at Texas Children’s due to a 16 hour long seizure which resulted in pneumothorax. The ambulance trips and ER visits can’t even be counted on both hands. He has physical therapy and occupational therapy weekly for right side weakness accompanied by a daily medication regimen. He has also recently been fitted for a leg brace due to muscle weakness which is stunting his ability to walk. Unfortunately, despite prior medical intervention and being on the highest possible dosage of medications, Tristan’s seizures continue to increase in severity and frequency. Thankfully, we are not out of options.

A hemispherectomy is an operation that partially or completely removes/disconnects half of the patients brain from the rest of their brain. It’s a rare procedure, but is highly successful. Typically, more than 80% of children who undergo hemispherectomy are completely seizure-free. The remaining 20% of children who have hemispherectomy have significantly fewer seizures after the operation. After the surgery he will be in the PICU until he’s stable enough to be moved to the pediatric neurology department, then to an inpatient rehabilitation facility where he will be working on basics skills, PT/OT and Speech therapy. Finally, he will be able to come home and continue PT/OT. The entire process will span over the course of 6-12 weeks depending on his response and recovery speed. He will also undergo a few special tests and scans in May of this year, prior to the operation that will require shorter hospital stays.

With all of this comes a lot of fear and uncertainty. We know that what we are doing is what’s best for our boy, but the reality of it all is very heavy. Even with insurance, the expenses are astronomical.

Taking into consideration the procedure costs as well as the amount of time required for us to be off of work, we just aren’t in the financial situation to take this on alone. So, for the very first time as parents, we are asking for support from our village.

Anyone who’s had the pleasure of meeting our sweet boy knows he’s a fighter. He’s tiny but mighty and we so desperately want him to live a life with less worry and fear. With the help of your donation, we can make that happen.

With all of that being said, we are aware of the state of the economy and how hard it is right now to find an extra dollar to spare, so please know that we are appreciative of anything you are willing to give, even if it’s a prayer for our sweet boy. Thank you so much for your support.

Jennifer and Nicole Nelson