Love For Lav
Okay Charlie’s Village, this week is going to be a little different.
Lavender is a beautiful girl who was born with many health difficulties, the main one being Trisomy 18. If you don’t know what that is, it’s a syndrome developed in the womb resulting in stillbirth and or an early death in an infant. 95% of babies diagnosed with trisomy 18 don't survive beyond the first year, but most don't even live for a few days. Lavender... well.
She just celebrated her 6th birthday.
This is an absolutely incredible milestone. Lavender is a beautiful miracle right before our eyes. Lavender has the best older sister she could ever ask for named Luella. Lavender loves being around her family so much. Her mom writes: “Lavender will always be disabled and have cognitive delays, but she is perfect as far as we are concerned. She is everything that is right in the world. She is so happy and so loved by everyone that meets her.”
She has endured so much in her 6 years of life. She not only fights through everything that trisomy 18 causes, but she also has laryngomalacia (corrected with tracheotomy), feeding difficulties (corrected with Gtube), and epilepsy. Her mother Rose fiercely advocates for Lavender and all medically complex children by sharing her story on Facebook and Instagram and works hard to shine a positive light on caring for a medically complex child. In sharing Lav’s life with others, Rose brings so much hope— something that is deeply treasured in a community where it's easy to lose it.
On the side of being Lavender’s full time caregiver, Rose also runs a side project where she transforms dolls to represent children and their medical complexities. She asks for sponsors for her dolls, but doesn't take much from it. She works so hard to help children embrace their medical differences and give them a sense of belonging.
I really want us to help her help others by not only fundraising for her family, but fundraising for her project. So, this week, I’m asking that you pledge $2 instead of $1 so that one dollar can go to her family’s financial struggles and the other can go to helping her continue her dream of making a difference in the medially complex community. I’ll never forget the look on Charlie's face when she opened up her doll from Rose. Her baby had an NG tube, an Ommaya Reservoir (head port), and a chest port. It helped Charlie by medically caring for her baby and bringing her along to appointments. I want us to help Rose continue that passion and hopefully help her grow.
Join me in helping this beautiful and inspirational family by donating only $2 to them today.
Donate through VENMO with a note that says
#LoveForLav
