cropped-mickies-logo.png

[vc_row][vc_column][vc_column_text]As Infantile Spams Awareness Week approaches, I am reminded of some very special people whose stories have been imprinted on my heart and fuel our mission to educate parents, medical professionals and legislators on the devastating effects seizures have on the developing brain of a child. I think about baby Dani and her mother, Val, every single day.

When Mickie was admitted to CHOC Children’s Hospital at 11 months old I asked to be connected to other families facing Infantile Spasms (IS). Val and I began sharing our journey over text message. Our girls were the same age, diagnosed with IS and we were holding on for dear life to save them. Dani and Mickie continued to seize uncontrollably, failing one anti-seizure medication after another.

When we found out Mickie had a focal point on her brain that enabled her to have life-saving brain surgery, Val shared with me their MRI failed to find a focal point and therefore surgery was not an option. My heart sank. Dani was now having 100s and 100s of seizures a day and they were running out of options. As Mickie went from surviving to thriving, Dani’s health deteriorated. And then the unthinkable. On March 10, 2016, Dani passed away. IS caused so many complications that it cost this little warrior her life. Her parents have created a beautiful garden in her memory where butterflies, hummingbirds and bunnies come to visit.[/vc_column_text][/vc_column][vc_column width=”1/2″][vc_column_text][/vc_column_text][/vc_column][vc_column width=”1/2″][vc_column_text][/vc_column_text][/vc_column][vc_column][vc_column_text]We memorialize Dani here as one of Mickie’s Angels. She is a daily reminder of why our effort in advocacy and education is so critical. Next week, I will be traveling to Washington D.C. to share a parent’s perspective on the effects of IS with the Congressional Neuro-Science Caucus. Please stay connected with us as we share more stories, research and inspiration on the fight against pediatric epilepsy.

P.S. Every day I struggle with feelings of guilt over why our daughter was spared when more than one third of kiddos die from IS. Until my last breath, I will speak up for these angels who no longer can.[/vc_column_text][/vc_column][/vc_row]

235 Responses

  1. I cannot thank you enough for the blog post.Really looking forward to read more. Great.

  2. Hi there! I’m at work surfing around your blog from my new iphone 4! Just wanted to say I love reading through your blog and look forward to all your posts! Keep up the superb work!

  3. I will right away grasp your rss as I can not in finding your e-mailsubscription link or newsletter service. Do you’ve any? Kindly permit me realize in order that Icould subscribe. Thanks.

  4. Hello! I could have sworn Iíve been to your blog before but after browsing through many of the articles I realized itís new to me. Anyhow, Iím certainly pleased I came across it and Iíll be bookmarking it and checking back frequently!

  5. Aw, this was a very nice post. Finding the time and actual effort to create a very good articleÖ but what can I sayÖ I procrastinate a lot and don’t manage to get nearly anything done.

  6. Agora, a tecnologia de posicionamento tem sido amplamente utilizada. Muitos carros e telefones celulares têm funções de posicionamento e também existem muitos aplicativos de posicionamento. Quando seu telefone for perdido, você pode usar essas ferramentas para iniciar rapidamente as solicitações de rastreamento de localização. Entenda como localizar a localização do telefone, como localizar o telefone depois que ele for perdido?

  7. You can definitely see your skills in the article you write.The world hopes for more passionate writers like you whoaren’t afraid to say how they believe. At all times follow your heart.

  8. Greetings! I know this is kinda off topic but I was wondering if you knew where I could locate a captcha plugin for my commentform? I’m using the same blog platform as yours and I’m having problems finding one?Thanks a lot!

  9. Oh my goodness! Amazing article dude! Thank you so much, However I am having troubles with your RSS. I donít know why I cannot join it. Is there anyone else having the same RSS issues? Anyone that knows the answer will you kindly respond? Thanx!!

  10. Thank you for the good writeup. It actually used to be a enjoyment account it.Glance complicated to far brought agreeable from you!By the way, how can we communicate?

  11. Você também pode personalizar o monitoramento de determinados aplicativos, e ele começará imediatamente a capturar instantâneos da tela do telefone periodicamente.

  12. The concept of conscious consumerism is intriguing. I’d love to hear more about how individual consumers can make a difference in supporting sustainable businesses. Are there any specific actions or choices we can make in our daily lives to contribute to this movement?

  13. Diga adiós a todos los molestos anuncios simplemente descargando nuestra extensión gratuita adblock chrome. Esta es la mejor herramienta donde puedes bloquear todo tipo de anuncios y te permite ver tu video favorito sin ningún problema. Bloque de anuncios cromado también protege tus datos privados de terceros.

  14. twitch ad blocker chrome twitch adblock twitchadblocker Twitch ad blocker is a helpful tool Twitch adblock firefox stops ads from appearing when you watch live streams on Twitch, it prevents all those annoying ads from showing up in between, So it’s time to install the extension to broadcast live streams in a hassle-free manner.

  15. adblock hulu hulu no ads Hulu ad blocker is a browser extension that helps block advertisements while streaming content on the platform, it prevents ads from playing during TV shows, movies, and series that allow you to watch your favorite programs and shows without any disruptions.

  16. SEO Neden Önemlidir? | Yazınızda bahsettiğiniz web tasarım trendleri gerçekten ilginçti. Web sitemin daha modern ve güncel bir tasarıma sahip olması için bu trendleri dikkate alacağım. Bilgilendirici içerikleriniz için teşekkür ederim.

Leave a Reply

Your email address will not be published. Required fields are marked *

Skip to content