A few months ago I got a phone call from my old friend Wendy Richards. She and her husband said that they had been thinking of ways to help us She had spent hours pouring over my blog and had started to create a foundation in Lila's name. They wanted to call it "Lifting Lila" She had posted research, stories and pictures of tulips, they had already talked to graphic designers, web designers and corporate sponsors. I was in shock. You can imagine how incredibly touched I was. Quinn and I had always talked about starting a foundation, about wanting to make something good come out of all the pain that we had gone and are going through but we had no idea how to start.
Since that day Wendy, her husband Will, Quinn and I have spent hundreds of hours on the phone discussing what we want Lifting Lila to be. We decided that we wanted to help terminally ill children with rare conditions and their families. We wanted to do this in three ways, connect the families, facilitate research and alleviate financial burdens on the families struggling with a terminal illness. It has been a long road already. Getting a non-profit up and running takes a lot, a lot of red tape. Thank goodness we have Will! But we are excited to get going. So while we are waiting for our 501c3 status (which means we can legally start to take donations) we are wanting to start the connecting families part of the organization. I am truly passionate about this part. Having moms like Nikki, Rachele, Nichole and others to talk to has been a literal life saver for me. We are looking for families that have kiddos with rare terminal illnesses who want to connect to other families and have a support system who can relate to what they are going through. If you know anyone who fits this description please tell them about Lifting Lila.
And please check us out.......
I just wanted to give a special thanks to Wendy and Will Richards for creating Lifting Lila and making it possible. Especially to Will. He has spent thousands of hours on this. All the while finishing up MBA and law school, studying for the bar and being a husband and dad. You guys are awesome! Thank you for helping us create a wonderful legacy for Lila and for letting her live on after she passes.
