It's been a year today since our sweet Charlee went to Heaven and was set free from Late Infantile Batten Disease. She met Noah on his second run and even though she couldn't see him, he always seemed to make her smile. Her sweet smile and warm spirit is missed more and more each day. We love you Charlee!
For my strong, little, Maddie, age 6, who was born with VACTERL Association - malformations of the vertebrae, anus, heart, trachea esophagus, kidneys and limbs. The severity of the condition varies in different children; what remains steadfast is their will to live a full and joyful life. Thank you, Noah, for helping to bring awareness for rare diseases.
For my son Chase, diagnosed with FPIES. FPIES is food protein Induced Enterocolitis syndrome, a rare severe food allergy. There is no test for it, no cure. It primarily affects the GI tract and certain foods (even hypoallergenic ones like rice) can cause acute vomiting to the point of hypovelmic shock. Thank you for doing this run.
My son Noah is 3 years old with a rare disease that affects the lungs, sinuses, and ears called primary ciliary diskinesa(PCD). He is one of the strongest kids I know even through all the breathing treatments, chest compression therapy, surgeries, and hospital stays he always smiles and thinks of others. Thank you so much for bringing attention to all the rare kids and the struggles they face most importantly how brave they are!
For my grandson Seth Dunford. Was diagnosed with batten January 11 2013. Lost his battle with batten January 14 2015. He wad the strongest little man I know.