This was the second such incident. In 2015, Noah spent almost a month in ICU unable to breath on his own. It started on February 1, 2015, after watching Super Bowl XLIX, Noah was preparing for bed when he began having trouble swallowing the secretions in his mouth. A trip to the local hospital quickly turned into a fight to save his life when he went into respiratory failure and required a tube in his trachea to clear his airway. Once the doctors were able to stabilize him, he was medevaced to the intensive care unit at Phoenix Children’s Hospital and placed on a ventilator for several weeks.
Noah was diagnosed with myasthenia gravis, a chronic autoimmune neuromuscular disease that causes weakness in the skeletal muscles responsible for breathing and the moving parts of the body, which includes arms and legs. The symptoms of this disease generally worsen with activity and there is no known cure.
Since receiving his diagnosis, Noah has battled through multiple hospitalizations, experienced respiratory failure three times, and has been poked and prodded more than a herd of cattle.
Most recently, on May 4, Noah contracted the RSV virus and, as a result, experienced his most recent myasthenia crisis (respiratory failure). He was medevaced to Phoenix Children’s Hospital again and remains in their intensive care unit. With a severely diminished immune system, he also contracted staph pneumonia and a urinary tract infection.
Following a battery of X-rays, treatments, CT scans, blood tests and culture samples, the neurology team responsible for his primary care has decided to keep a PICC line in his chest cavity for future treatments with Rituxan, an antibody therapy that is generally used for cancer patients. This is in addition to a breathing machine he will need to use indefinitely when sleeping and the immunosuppressant drugs and steroids he is currently taking.
Noah’s long-term prognosis is unknown, but the hope is that he goes into remission at some point. The neurology team at Phoenix Children’s Hospital hasn’t seen such an aggressive case of myasthenia so they will continue to consult with leading experts around the globe to find the newest and best treatment options.
DC’s a private guy but he agreed to let us tell his story as his family can benefit from the positive energy in prayers and blessings. There is also a financial component. As you can imagine, the financial strain is almost equal to the emotional. Please join me in keeping them in your thoughts and prayers and if you would like to join me in making a contribution do so at this GoFundMe page.
- Jonathan Rinehart
- Liz Manning
- Hope Dimberg
- mark pray
- Jara Minter
Organizer and beneficiary
#1 fundraising platform
More people start fundraisers on GoFundMe than on any other platform. Learn more
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