The following is from Jaxx’s mom:
Jaxx has a rare syndrome called Moebius syndrome. 1 in a million are affected by this neurological disease. When pregnant we were only aware that he had clubbed feet. Once Jaxx was born we discovered he had a small jaw, cleft palate, abnormal and webbed hands, and clubbed feet. A little further down the road we discovered he couldn’t blink, move his eyes side to side, suck nor swallow, low muscle tone, and facial paralysis.
Jaxx was transferred to Nicklaus Childrens NICU at 10 days old where he spend just about the first 7 months of life. His first of 9 surgeries was at 5 weeks old where they placed distractors in his bottom jaw to lengthen it. Jaxx’s most recent surgery (April 13) was the start of finger separation.
Jaxx is only tube fed, on a ventilator at night, and still isn’t able to walk due to his low muscle tone… but that doesn’t stop him from rolling and crawling around like a ninja! We have 5 different therapies all throughout the week some come to the house and the others we commute to South Boca. Most of his doctors are at either Nicklaus Children’s in Miami, and Joe DiMaggio in Hollywood.
Only the best for my Jaxx!
I gave up working, and attending to school to ensure Jaxx has the best shot at a normal life (therapies, surgeries, and docs appt), and I am so proud to say Jaxx is thriving and blowing his doctors away.
I just want to add that I have a 10 year old healthy with no medical issues. I don’t have any health issues and consider myself a healthy, young, and “normal” mom.
Never did I ever think something like this would happen to me.
It could happen to anyone!
I am honored to be Jaxx’s mom. He needs me just as much as I need him!
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As Jaxx’s grandmother, I would like to add that Jaxx’s mom, Jackie has gone through and continues to go through so much more than she has described in her story. She makes it look and sound so easy. From having to pull over on I-95 to do a trach change on the highway, because Jaxx wasn’t breathing to just about daily sleepless nights due to his ventilator continually beeping. The tasks are numerous, many of which I am not even aware of…
Jaxx will soon turn 3 years old. He sure has come a long way! As Jackie notes, he recently underwent his 9th surgery in this short amount of time and has several more to conquer! Jaxx has been called a soldier, trooper and just an outright strong baby!! His strength and determination both come from his strong support system and the love that surrounds this special child. Love and support from idviduals and organizations such as Hope from Harrison! Thank you so much for helping Jaxx in his journey ❤️
My amazing granddaughter Jackie practically lived at Nicklaus Children’s Hospital for 7 months steadfastly caring for and remaining by Jaxx’s side day and night advocating for him, overseeing every decision concerning Jaxx’s health care and fighting for his best interest every step of the way. Watching Jackie interact with all the doctors, nurses, surgeons and social workers at the hospital blew me away! You would think she was one of the doctors herself by watching and listening to her advocate for her precious baby boy’s life. And Jackie selflessly continues to devote all her love and support for Jaxx 24/7.
Team Jackie and Jaxx are fighters and not only survivors but thrivers!
I’d like to thank everyone for being loving and supportive to Jaxx and Jackie and thank you, God bless you Hope from Harrison for all that you do. 💜