TEAM BABY TAYLOR, STOP THE SEIZURES

My name is Stacy and at 8 days old my journey began with this little lady, Baby Taylor! She began seizing 3 days after I brought her home from the hospital! Can you imagine doing CPR on your week old? I sure didnt!! It took me 2 months fighting with Dr's to prove to them that she was seizing. We even tried another hospital! FRUSTRATING!! The hospitals continued to tell me she had an ALTE or Apnea! Which I knew wasn't the case so I started videotaping her episodes! Finally on October 1st they found the seizures coming from the front right lobe, so we started to treat her! Well little did we know that was just the beginning, it continued happening over and over and every time she seizes she has to be given CPR to make her breathe because she turns blue!! We did tons of testing 10 EEGS, 3 MRI, ultra souns of brain, countless XRays, swallow studys, a sleep study, genetic testing, epilepsy panels, metabolic testing, pH probe testing, laryngoscope down her throat, EKGs, 3 ecocardiograms and countless blood work tests! With all of this we have found she has laryngomalasia, mixed apnea (central and obstructive) mechanical reflux and epilepsy that is caused by a rare gene mutation that Taylor is the only one in the US that has it that we know of in medical data bases!! To make matters worse over the past week she has been seizing all day and we have been in ICU for 2 1/2 weeks bc the mutation makes meds refactory, which means they stop working! Since November 1st we got to be home 4 days over thanksgiving bc she was interacted and had chest infection due to the tube and tons of breathing issues that I think I may have slept 3 hours in 4 days! I've been pushing and will continue to push until there is nothing left in me for the best quality of life for my baby! She is going to start the ketogenic diet tom and we have talked about CBD oil and even pushed for this hospital to reach out to Baltimore All children's to see if there are any trials or research groups or if they would like to see her! So we wait and I can't even begin to express how terrifying and heartbreaking it is!! I chose to start this go fund me because of hrr further care. She is followed by OT, PT, pulmonology, E.N.T, Cardiologists, speech, neurologists and a dietician! My job is to fight for her and be strong and I am trying my hardest with all of you by my side praying for this sweet angel. I thank you all from the bottom of my heart to keep her in your prayers!!    
  • Jennifer Brown 
    • $20 
    • 43 mos
  • Kristin Koulik 
    • $20 
    • 43 mos
  • Helene Luchetti  
    • $10 
    • 43 mos
  • Roseann Vanchure-Gavin 
    • $55 
    • 43 mos
  • Jake Grande 
    • $50 
    • 43 mos
See all

Organizer

Stacy Czerniakowski 
Organizer
Fort Hamer, FL
  • #1 fundraising platform

    More people start fundraisers on GoFundMe than on any other platform. Learn more

  • GoFundMe Guarantee

    In the rare case something isn’t right, we will work with you to determine if misuse occurred. Learn more

  • Expert advice, 24/7

    Contact us with your questions and we’ll answer, day or night. Learn more