Lilah: recessive dystrophic
|
Lilah was born via a routine scheduled c section. Little did we know there would be nothing routine about it. Lilah had no skin on her hands or feet at birth and was instantly rushed from the room to be transferred to a hospital hours away from me. I fought to leave right away and be with her. I have and always will fight for her in this way.
Soon after some genetic testing, Lilah was diagnosed with Epidermolysis Bullosa. I was told she might not make it to a year. Here she is, almost 10 years later. Nothing can prepare you for what it means to manage daily life with Epidermolysis Bullosa. 4+ hour long bandage changes 3-4 times a week. The screams of pain from the child you are meant to protect, and the inability to stop it from happening. With all that aside, Lilah has been nothing short of an inspiration to everyone who has come to know and love her. She is so funny, smart, and creative. Her heart is of a caliber I have never known. Her resilience and resourcefulness is unmatched. Even though she misses a LOT of school due to infection and illness, Lilah is currently rocking it at 4th grade! As a parent it is hard to see what our children deal with physically, mentally, and emotionally. Watching her sadness as she realizes all the things she cannot do safely like the rest of her peers is indescribable. Reading her bedtime stories of far off adventures and unrealistic things she may never be able to participate in is what inspired me to make a change. I wanted these kids to have a story they could relate to and be proud to share. So I wrote Cotton Candy on the Moon. I have made it my mission to use all monies and royalties received from the sales of my book to provide it to families like mine who are dealing with EB completely free. It is these small things that can make a HUGE difference in the lives of kids like Lilah. Lilah is so incredible. She inspires so many and leads with strength with gracefulness. She has taught me to smile through the pain, to dance in the rain, to shine my light in all the darkest corners, to never give up, to celebrate everything, and to laugh when I feel like crying. Life may knock us back, but it will never, ever, knock us out. I believe that we can find a cure for EB by the end of this decade. I couldn’t say that 9 years ago. There was no hope, but now I know there is hope and we cling to it. We need this cure now more than ever, for Lilah and all of the butterfly warriors. -Kelsey, Lilah's mom Kelsey is also the author of "Cotton Candy on the Moon!" 
|
|
