Brayden W.
Pennsylvania
Birth Date - March 9, 2004
Diagnosis - Cystic Fibrosis
Theme: DOLPHINS, WHALES & PORPOISES
(Realistic Designs)
Due Date: 10/1/17
Brayden's Story
Brayden was diagnosed with CVID in 2010 and in June 2011 was diagnosed with A Typical Cystic Fibrosis. It was like I was in a bad dream and couldn't wake up as I heard those words. Over the past year Brayden had started new treatments, including a percussion vest. He had been in the hospital at least 12 times that year and had to have PICC lines put in to give him IV antibiotics. In November of 2011 during his hospitalization for a "tune up" he also had a G-tube placed to provide him with the necessary calories to help him fight infections and to grow.
He has had many other medical issues including Failure to Thrive, Asthma, and Gerd. He does not produce antibodies to help protect him from infections, so he has to have monthly IVIG infusions to replace his missing antibodies. He has been through so much in the last 8 years, and he is so strong.
During a hospitalization in July 2012, he could hear a baby crying in the room next to him, and he looked at me and said he wanted to sell Roses to raise 1 million dollars so no kids get sick and have to go to the hospital anymore. After fighting back tears, I told him how proud I was to be his mom, and that we would make that dream come true! I contacted the Lehigh Valley Cystic Fibrosis Foundation and told her Brayden's dream, she was touched and has been an instrumental part in helping Brayden reach his goal.
In 2014 Brayden was diagnosed with Mitochondrial dysfunction/disease, and Ehlers Danlos syndrome. He receives occupational therapy twice a week and physical therapy once a week. So far this year, Brayden has been hospitalized since January. He was recently diagnosed with Vocal cord dysfunction. We will now need to go for speech therapy to learn breathing exercises to help his vocal cords stay open.
Brayden has a pretty good handle on everything that is going on with him. He told me yesterday that he does not want pity from anyone, that he knows there is no cure for any of his diagnoses but he is happy that there are treatments, and that he has hope that one day there will be a cure. In the meantime he is just going to keep fighting, be a kid and have fun. He said he understands that he will have bumps along the way, but they just make him stronger, and that God is with him during this journey. Can you say wise beyond his years???
"I don't know how to thank you enough for Brayden's quilt. He has been struggling since August with Cystic Fibrosis exacerbations. He absolutely loves it and is very thankful for all the hard work and love that was put into this amazing quilt. Thank you again."
