Wednesday, April 18, 2012

Share the love.

(Red Fraggle, I mean Charlie, 33 months old)

About 5 months ago, I happened upon and 'liked' a page called 'The Anaya Initiative' on Facebook The page was/is about a little girl Charlie's age that had Krabbe Leukodystrophy, a rare terminal degenerative disorder. Anaya reminded me so much of Charlie...weak, unable to stand or walk, fed through a g-tube, and using bipap. I'd just happened to 'like' the page about 2 weeks before she passed away, and to be honest it was often hard for me to read the posts and look at the pictures because Anaya reminded me so much of Charlie. I was really, really affected by her story.  Camara, Anaya's mother is a very candid woman who was/is not afraid to bare her soul and share Anaya and her story with the world. Not everyone can do that, but I am similar, so I could really relate. Reading about and seeing pictures of Anaya's final days made me feel like I was having an out of body experience and looking down at my own life. I mourned with thousands of others when Anaya left this world November 13th 2012.

After Anaya's death Camara decided to devote her life to helping families dealing with not only Krabbe Leukodystrophy, but all sick kids. She started working for FundRazr, a company that created a fundraising/marketing app that she used on Facebook when she needed financial support for Anaya's health care costs. She started a new division of the company where she specifically helps families  with sick children create campaigns to help them raise money for their medical needs. About 5 weeks ago a post came up on 'The Anaya Initiative' about Camara needing an intern to help with the campaigns, I wrote back right away, Camara called me a 1/2 hr later, we met up that Tuesday, ended our 'interview' with a hug instead of a handshake, and I've been helping out ever since (even starting my own FundRazr raising money for SMA research which has raised $2400 in less than 2 weeks). 

I went to school for social work and counselling, so this was right up my alley. I'm dealing with families I can relate to and empathize with. I'm helping them create campaigns to help minimize the financial stress in their lives so they can keep the focus on their sick child. That feels good. And, I'm working with a woman who lost a child only 5 months ago, and is still a fully functioning human being. I honestly believe I was supposed to meet Camara, learn about Anaya, and find this path. I spend a lot of time worrying if I'll even be able to breathe again in the possible event of an 'after' Charlie. Now I get to spend time with someone 'after' and she is living proof that it's possible I'll not only be able to breathe again, but perhaps I'll even be able to smile and laugh and work again 'after'.
But, as my friend Ivan says to me REPEATEDLY, "We are here today, tomorrow does not exist yet." And today is good.

Camara has a blog about Anaya, check it out here:

And here are links to a recent campaign that is very close to my heart. Raising funds with Bobs and Lolo for BC Children's hospital. Help if you can!


  1. i really appreciate this post! i can push through most of he depression associated with our lifestyles but the whole "after" situation is another story. its the one trigger that brings me to tears is so good to have strong moms around that can help me with these feelings.thank you again for sharing this blog and for sharing your resources. you are an amazing woman and mom. charlie is very lucky to have you as a mom

  2. you often wonder "why charlie"...maybe this is why. maybe this is the bigger picture the universe set in motion with charlie's birth. i know it's not the path you would have chosen, but i believe this is something you were meant to do. :)

  3. After reading Camara & Anaya's story, you two Moms were obviously meant to connect for a few reasons, I believe. She helps you to see how life can go on and you help her to keep Anaya's story/memory alive; and you both bring so much wisdom, insight, awareness and reality to our community! Thank you for all that you share - amazing, just absolutely amazing! Hugs to you and Charlie (even though I'm a stranger) - you're both so very precious!