Tl;dr? I rarely do fundraisers, but this week the kids and I are raising money for a foundation that is very dear to my heart on many fronts. So please donate if you can. More info below.
5 years ago my friends Ashley and Mark had their second child -- an awesome baby girl called Coco, who happened to have special needs. No doctor could diagnose a specific disorder and Coco contributed the final push to the identification of a new genetic disorder (or perhaps the formal recognition of an existing one): EBF3 HADDS [EBF3 = the gene the mutation occurs in and HADDS = an acronym for some of the features: Hypotonia Ataxia, and Delayed Development Syndrome.
I know what you’re thinking: wow! Two kids, two full time working parents, figuring out special needs accommodations and contributing to research… Ashley and Mark must have been exhausted and when that journey was over, gone on a huge vacation and generally just sat around eating cake. Well – yes and no. They do go on awesome vacations and Ashley definitely does eat cake. But they ALSO established an entire foundation dedicated to spreading awareness about EBF3 HADDS and held the first ever HADDS international conference (feeling bad about how you “don’t have time” to do the laundry? I am). In the process, they helped bunches of families understand their children’s needs for the first time, and connected them to a support network of people with knowledge (clinicians) and people with experience (HADDS families). I’m tellin’ ya: the testimonials of these families will bring a tear to the most hardened of hearts. Mike Pence: I am looking at you.
As you probably know, I am rarely a “fundraising” person. Personal donations? Sure. But growing up in the era of sponsored-everythings (thanks Blue Peter) I’m a bit “meh” about asking people to pay me to do what I’d probably be doing anyway. But this is different. Ashley has been awesome to me. The time I was crying in the Target parking lot because my kiddo needed meds and I’d lost my wallet? She appeared with her magic credit card. That day I spent in Fort Bend county jail? She partied the tears out of me the day after. I know Coco, she’s a friend of CG’s, and I love that fierce little ballerina girl. The only things I really care enough to make sustained efforts to contribute to are: gender equality, black lives matter, scientific progress, and giving children the best chance at being the happy, joyful beings they are (except when my own happy, joyful angels are calling me at 4 am… then they can be miserable and wail on their own). We are at a solid 2 out of 4 of what Icare about here. AND ITS GENETICS FFS. It’s like someone said “I’m gonna do it Lekki. I am gonna create a cause so tailored to you, you’re not going to be able to resist participating”.
So, this week, I have been running every day and tagging on at least one extra mile for HADDS (they are trying to log miles). More impressively, I am going to drag my tired, post-school whiney, lazy, little uh… happy joy filled angels… on a 3.1-mile walk (5K) in their Halloween costumes. Or imma make Hunter do it. If you can sponsor Sam, or CG, or me, or Hunter or the whole dang Frazier-Wood-Capoccioni family and contribute to the awesome HADDS foundations it would be so appreciated. Thank you .