I wish to have a camper
Khami
3
respiratory disorder
Khami's wish to have a camper
Hi, I'm Khami and I'm 3 years old. When I was one month old, I was found unresponsive in my crib. This started my seven month hospital stay, where I was diagnosed with Joubert Syndrome. Only 1 out of 100,000 people have my same diagnosis. Part of my brain is shaped like a molar tooth, and part of my Cerebellum Vermis is missing. With this diagnosis came a lot of health issues, and I have a team of seven doctors that I see regularly. I am dependent on a Tracheostomy, have a feeding tube to get most of my nutrients and require a ventilator while I sleep. I am also diagnosed with partial blindness, low kidney function and low muscle tone, which is why I'm unable to crawl or walk yet.
I love toys with bright lights and loud sounds, being outside in my lawn chair and when the rain hits my face. I love playing with my cousins! I also love music like "You Are My Sunshine", "Boy" by Lee Brice and the chicken wing song. My family says that my smile lights up a room, and I think it is so funny when my cousin dances. The movie "Trolls" is my favorite because it has lots of color and music. I like to snuggle when I'm tired, and I have a blanket that I can't live without.
Most families celebrate milestones. Well, we celebrate "mini-stones" - every one of them. It takes 2,000 steps to walk a mile, which means we have 2,000 mini-stones to reach our milestones, and we stop with every step and celebrate. My grandma says that I have taught her more in my three years of life then she could ever teach me.
Words cannot express the gratitude we have for the camper. It’s not only a wish, but a gift of making memories that will last forever. This gift has opened doors for me to be able to travel and go camping with my aunts and cousins safely. My grandma says that she camped a lot as a child. I haven’t been able to enjoy this tradition, but with the camper, I will be able to share these experiences. For that, my family and I am forever grateful.
