In our fight against chILD disease, what most inspires us all – parents, friends, physicians and researchers – are the children who suffer from these disorders, yet still find joy in everyday life. They motivate us in this vital work, and give us all a reason to hope. Here are just a few of these remarkable kids:
7-year-old Taylor has had 12 surgeries, spent 600 days of her life in the hospital, and must be on oxygen most of her day.
About two weeks after Taylor was born, her mother thought she heard her dog panting heavily nearby, but soon realized the panting came from Taylor’s loud, hard breathing. Her pediatrician said it’s normal for newborns to breathe fast and that she would grow out of it.
At six months she was admitted to the hospital for low oxygen saturations and possible whooping cough, and a chest X-ray indicated bronchiolitis and double pneumonia. Even after antibiotics and regular doctor visits, her oxygen saturation remained stubbornly low.
Eventually a CT scan indicated that she might have a type of children’s interstitial lung disease called Neuroendocrine cell Hyperplasia of Infancy, (also known as chILD NEHI), so Taylor came home with oxygen and an NG feeding tube. Read more >
Alida spent the first 8 days of her life in the pediatric ICU and was sent home with an apnea monitor and oxygen. Early attempts to remove her from oxygen resulted in viral pneumonia and, when she was just under one year of age, she was diagnosed with a rare lung disorder called NEHI with GERD.
Willing to move mountains for their little girl, and fearing the altitude and air quality in Utah were not helping her to improve, her family moved to Georgia, where she improved only marginally.
At eight years old, Alida has had her tonsils and adenoids removed, has added asthma inhalers to her daily regimen, and suffers increased heart rate every time she attempts to breathe without oxygen.
Like so many little girls her age, Alida loves dogs and dolls, wants to be a scientist when she grows up, and enjoys singing and science projects. Read More >