A fighting chance against Arthrogryposis Multiplex

On behalf of one of the strongest mothers I know... OPEN HEART LETTER “At 20 weeks pregnant, we learned that something was highly unusual about Noah's anatomy. They couldn't tell exactly what was going on but they knew that this was something they had never seen before. An abortion was offered but that was never even a thought for me and I had already loved him unconditionally. I was willing to give it all to God and trust that whatever was meant to be, would be.  His birth was traumatic. He wasn't breathing and had to be resuscitated. At one point, the doctor had even wondered out loud if he did the right thing by saving him. Many of his bones were broken and twisted, some beyond recognition. His spine was so curved that his head was actually touching his bottom. His body was in the shape of a backwards "C" and he was completely paralyzed.  The NICU was our home for the first month of his life. We almost lost him several times. My only instructions upon leaving the hospital was to love him and enjoy whatever time we had because it wouldn't be long. After several weeks, with the help of the internet and family members, we found a diagnosis that was later confirmed by a Specialist that he did, in fact, have a condition called Arthrogryposis Multiplex Congenita. This leaves all of Noah's joints contracted, in a fixed and unmovable position. Along with that, he suffers with severe lordosis (the curvature in his spine) which leaves him with only one functioning lung.  Noah's life has been a challenge, to say the least. Battling life-threatening infections that resulted in him being on antibiotics more than he was off of them for several years. His first 4 years were spent in and out of the ICU. Multiple times, he stopped breathing and was on and off of a ventilator for survival. When home, he was sick more than well. On his first birthday, we finally had to make the decision to get him a tracheostomy and a year and a half later, he got a feeding tube. After his 4 year old shots, Noah developed sleep apnea and would stop breathing through the night. Between that and always being sick in the hospital, his pulmonologist, at the time, decided it would be beneficial for Noah to have a ventilator at home for night time and when sick. At this point, we all felt like this might be the end of the road for him. In fact, Palliative care was set up for him during that hospital stay in 2018.  Like any good mother or father, though, I wasn't willing to give up just yet. I decided to take a leap of faith and reach out in search of alternative options. This led me to our current Chiropractor, Dr. Tammie, she did begin to educate me on a new way of life and a new way of thinking. From then on, she started seeing Noah weekly and I could tell right away that he was starting to feel better. The smile on his face when he sees her is proof alone that what she does for him is working and that he absolutely loves it. I also began to do some of my own research and consulted a few Wholistic Practitioners and Nutritionists. Not without trial and error and a whole lot of prayer, hope and faith, was I finally able to find the delicate balance that Noah requires to stay healthy and to continue making progress. My child, whose health was declining before my eyes, was now being restored. The light in his eyes came back, he started smiling and making eye contact again and he started trying to communicate again. Noah is on a very strict and limited organic diet, he's on several supplements and our wonderful Chiropractor still sees him weekly. Unfortunately, though, all of these things that are currently working for him are paid for out of our own pocket and with the help of all of Noah's grandparents. All saving accounts have officially been drained to get him to this point and because of this pandemic, Noah's father hasn't had much work.  As hard as it is to ask, we are truly in need of help to continue Noah on this delicate journey and possibly better his quality of life even more so. The cost of his food and supplements alone are approximately $1,200 a month. This doesn't include his diapers, wipes, blue pads, gloves and other everyday essentials for him. Nor does it include his follow up appointments that we have had to put on hold lately because of our financial state. I've tried to go back to work and I've even tried to work from home but the instability of his condition and his around the clock care don't make those options realistic for us right now. So we are a one income family with special expenses, everyday bills and two other children to care for as well. We are so appreciative for anything and everything. God Bless!” When love asks a question, kindness always answer. With your kindness and generosity we can give the litle miracle and wise teacher a fighting chance. With your support and love we can alleviate some of the pain and suffering this family alone endures to ensure the safety and well-being of this child. Yours in service Tatiana Sofia Begault Proudly serving Noah (7), Aubree(12) and Jonah (6).
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Donations 

  • Dorene Witter
    • $10 
    • 2 yrs
  • Anonymous
    • $500 
    • 2 yrs
  • Tammie Gibson
    • $50 
    • 2 yrs
  • Ariel Moyal
    • $10 
    • 2 yrs
  • Karen Pellegrin
    • $100 
    • 2 yrs
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Organizer and beneficiary

Tatiana Sofia Begault
Organizer
Mandeville, LA
James Wiest
Beneficiary

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