Hi, guys..!! ..I'm Hunter! <3 I was born on April 29th 2013 at exactly 40 weeks (yup.. came on the day I was due!).. weighing 7 pounds, 9 ounces and 21 inches long. My mommy & daddy didn't know I was 'sick' until after birth. I was born with trisomy 21, multiple heart defects, pulmonary hypertension & a rare life-threatening congenital chylothorax (to name a few!) - ALL a direct result of T-21/down syndrome. I was flown to Children's Hospital in Pittsburgh within an hour after I was born. There is where I would spend the next 4 1/2 months fighting for my life.
I had my 1st open heart surgery at 6 weeks old for complete repair and reconstruction of my heart. Surgeons said I had all the right 'plumbing' ..but in all the wrong places. After I overcame that hurdle.. my congenital chylothorax reared its 'ugly head' again - almost claiming my life. Doctors were not hopeful in my outcome, but I continue to battle the beast - and I AM WINNING!!
I got my MIC-KEY button (feeding tube placement) in September. I'm only allowed to 'eat' special formula (portagen) via my 'tubie' - otherwise the fat will 'leak' from my lymph nodes causing fluids to pool around my lungs. I've had lots of painful chest tubes and I breathe 'super speedy fast' - but that's only because I have a mild-to-moderate pleural effusion from my chylo that still remains.
Soon I will need my second open heart surgery. My VSD patch leak (man-made wall in which separates the chambers in my heart) has gotten much bigger. I'm doing what I do BEST though - and that's FLYING BY THE SEAT OF MY PANTS! *giggles* No one knows for sure when - so as of right now.. the 'big day' is dependent on my current heart function. BUT FEAR NOT warriors - I see LOTS of Doctors, cardiologists and specialists regularly - plus mommy and daddy know the signs to look for if things should become worse - WE GOT THIS!!
Mommy setup this 'GoFundMe' account as a way to help alleviate some of the financial distress that comes from my extended hospital stays. Not only was this all very unexpected.. but way more than anyone could've ever prepared for. I require 24/7 care - and mommy stays home to make sure I get it!
I also have 6 super cool big brothers & sisters - Tyler 18, Brandon 16, Haley 11, Bella 7, Skylor 5 and Gavin who is 3 - they're all really good at helping out too <3
ANY donation, any size helps.. but if you're unable to, we completely understand. Mommy said our warriors are a lot like Angels - your positive thoughts and prayers have gotten us through MANY hard days. And those we appreciate.
Thank you for your continued love, hugs, prayers & support!
BIG Heart Hugs ~ Hunter & Mommy <3
P.S. Psssst! ..If you want to learn more about my specific diagnosis and courageous journey (before birth, after & current) ..please visit the 'NOTES' section located on my warrior page.. or by 'CLICKING' here - https://www.facebook.com/HugsForHunter/notes - you will find (in chronological order) my diagnoses, surgeries/procedures, milestones, trials & tribulations. Come celebrate with us!
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