This is Katharina McGregor, a 10 year old happy, funny, amazing little girl whose smile is infectious wherever she goes. She loves playing video games, watching movies and swimming. Katha has been diagnosed with a rare fatal disease called Niemann-Pick Type C for which there is no cure.
Niemann-Pick Type C (NPC) is genetic metabolic disorder. It means that her body cannot metabolize cholesterol properly but instead of gathering in the heart and arteries, it gathers in her liver, spleen and brain. As it gathers in her brain it damages it, which means she slowly loses all brain function.
As she loses brain function she is losing the ability to talk, walk, swallow and her memory. The nickname for this disease is childhood Alzheimer’s. As the disease progresses she will begin to have seizures which will speed up the progression of the disease. When diagnosed three years ago, doctors estimated she had five years to live, she is still walking but does need the wheelchair often.
Katha lives with her mom, Terese, dad, Amory, and two brothers, Dominik (8) and Jarrome (6). They are a very loving family who have learned to appreciate every day that they have together. They feel so grateful and blessed that they have been chosen for this project, especially now when Amory has been temporarily laid off work due to cutbacks and Terese has had back surgery, making certain tasks very difficult. This experience has shown them the best in humanity and how amazing people can be.
Neighbors will be renovating the home to meet Katha’s needs, which will include an accessible bathroom, main floor laundry and accessibility into the home.