Isabella's Warrior Princess Fund

As many of you know by now our sister Isabella has to have several brain procedures and brain surgery due to her disease.
Isabella has Tuberous Sclerosis Complex (TSC). She lacks a chromosome that prevent tumors from growing on major organs in her body. She has tumors in her brain, heart, and kidneys.
One in 6000 children are born with it. 90% of the children with this disease are epileptic. 60% are autistic and ADHD. Most of them suffer with learning and behavioral disabilities. 15% have a life threatening tumor in their brains called a SEGA (Isabella is one of them). If this tumor grows too fast it could cut her spinal fluid off.
Isabella’s seizures started at 5 months old with infantile spasms (these are the worse type) but unfortunately are very common with TSC. If they are not stopped in a timely manner they can do extreme damage to the brain and all the milestones they have reached could decline. There is no cure and the tumors will continue to grow. TSC Children’s lives are constant Doctor appointments. She must see her neurologist every 3-6 months and all visits require MRIs and blood work. She gets a renal ultrasound that is required by her oncologist to monitor her kidneys. She has echocardiograms done that are requested by her cardiologist for the rhabdomyomas (tumors) in her heart. As she gets older they will require tests for her lungs to monitor if/when she could be diagnosed with LAM. Isabella has been on medications since she was 5 months old. A few are cancer drugs to help shrink the tumors and some to stop the seizures. None of this will stop in her lifetime. TSC will always affect her everyday life. Right now Isabella is suffering from seizures (mostly at night) from the tumor in her left front lobe of her brain. Since the medications are not stopping them we have no choice but to remove the tumor. The steps to this removal are time consuming and require many nights in the hospital for each stay. With the severity of the tumor we have been referred to Houston Children’s hospital to further the testing and surgery.
Step 1 (ictel spec test) is to hook her up for an EEG, wait for activity and inject the dye into her body to be rushed to get an MRI to find out where the blockage is and pinpoint it. Depending on the time frame it takes for activity it could take a week.
Step 2 is to place the bone marker. It’s outpatient surgery that requires sedation, but they will drill into her skull and place markers into the brain on where to put the electrodes for step 3. She will get to go home that day. They will give her 5-7 days to heal and back for step 3.
Step 3 is to sedate her and place the electrodes into the bone markers and will be admitted to again collect more data with seizure activity. Could be 24 hrs, could be a week. After data is collected she will again be sedated to remove everything and stay in the hospital for an additional 48 hrs to make sure she is clear of any infections.
After healing 6-8 weeks then she will then take her in for the actual surgery to remove the tumor. Nothing is definite because she lacks the chromosome, so the tumor can/will grow back.

All of this will be done 13 hrs from home in TX. Most of it will just help with food, hotels, medical bills and keeping the house afloat with not working. Our Step-Mom Kelly was laid off of her job of 8 years in January so she did not have short or long term disability or FMLA at her new job because she hasn't been there long enough to qualify for it. Plus, with just starting the job she can’t miss a lot of work for fear of losing the job due to successive absences. So our father Chris will have to take her to a lot of these procedure and since he is main income provider, who will miss work they will struggle just maintaining the household and some normalcy for our other 9 yr old sister.


Made By: Christany & Chrischianna Vigil

Donations ()

  • Tatjana and Pat McAlister  
    • $100 
    • 15 mos
  • Allan Jaques 
    • $100 
    • 15 mos
  • Howard PTO 
    • $100 
    • 15 mos
  • Austin Swafford 
    • $50 
    • 15 mos
  • Miah Mannon 
    • $20 
    • 15 mos
See all

Organizer and beneficiary

Christany Vigil 
Organizer
Gallatin, TN
Chris Vigil 
Beneficiary
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