When Emmett was given the diagnosis of Infantile Spasms on August 9th, 2016, our lives were instantly thrown upside down. In addition to learning that our 7 month old baby boy had, out of nowhere, one of the most dangerous forms of childhood epilepsy (one that in the vast majority of cases has an incredibly poor prognosis), and despite a wonderful team of caring doctors and nurses, we were left feeling overwhelmed. Navigating the medical, social, economic, and psychological challenges of having a child newly diagnosed with a serious neurological condition is both isolating and horrifying. You are suddenly buried in an abundance of unfamiliar medical terms and expected to make tough decisions that will affect your child, with no experience - all while attempting to emotionally digest what is undoubtedly some of the worst news you'll ever receive.
This is where having another parent - one who has walked the same path - as an advocate for you is so important. We were lucky in that we had a few other parents who had been through this reach out to us to share their stories, but we would have done anything to have an actual person with experience by our side to help us navigate this terrifying new journey. Thankfully, Child Neurology Foundation is in the process of building an incredible program that will offer Parent Coaches to help guide other parents and caregivers going through the same experience. And we are humbly asking you - Emmett's friends, family, and fans - to consider helping us and CNF expand this program so more parents can give back, and so those new to the path never have to walk alone.
We will never forget, and never stop being grateful for, the positive thoughts, prayers, donations to Emmett's medical expenses (!!!), and general love from all of YOU, that have helped him, and us, through the most devastating experience of our lives. While Emmett's journey is not over, we feel incredibly fortunate for how well he is doing. He has been an "exception" when it comes to Infantile Spasms, with a very good chance of continuing to develop normally and lead a typical life. And that is why we feel that it is our karmic responsibility (truly) to help other parents who are faced with this journey. Helping to build this important program through this fundraising campaign is also something we feel we can do in Emmett's honor, as a way to continue to cheer him on through therapy, doctor and specialist appointments, and childhood/life, now that (hopefully!) the most difficult part of this is over for us.
During this season of giving and in the new year, please consider making a donation, no matter how small (even $1!), to Emmett's the Brave's CNF Parent Coach Program campaign. So many of you have already done so much to help Emmett, and we know that it may not be possible to help with this as well. Even just sharing the campaign and spreading the word about this fantastic program is so greatly appreciated! And if you can donate, please know that your dollars will be going directly toward building something truly incredible that will ultimately make a profound difference in the lives of other families going through heart wrenchingly difficult and uncertain times.
We promise we will keep you updated about this absolutely wonderful program, including our own roles as possible future Parent Coaches - so that, in honor of our Emmett, we can devote ourselves to making this journey easier for others.
From Emmett the Brave, his sister Essley, and his parents Melissa and Robbie, HAPPY 2017. We love you all.