The story of Tanya
Kaylee was born in 2013 perfectly healthy and full of the most amazing spirit and personality. She was a free spirit child that loved nature, animals, the outdoors and all things enchanted. Kaylee started unexplained falling at age 4, by age 6 she was having trouble walking, we received her diagnosis of IRF2BPL February 18, 2020. By age 7, she lost her ability to run and most of her ability to walk. Age 8 came her gtube with her loss of being able to eat. And then by 10 the most devastating loss was completely losing her ability to talk.
Now at 11 she is non ambulatory, non verbal, struggles with scoliosis, loss of muscle tone, weakened bones, weakened respiratory, seizures and vision problems. But when you get to know Kaylee you see a beautiful warrior tween with that same love of all things nature, animals and enchantment. She has a hilarious sense of humor, a tender heart for animals, a wild love of music and has a zest for life that is unmatched. She touches the soul of every person that meets her and she is the bravest fighter I know! We pray every day for a miracle so that this disease doesn’t take any more of our amazing Kaylee.