Hi Everyone! Thanks for visiting this page.
About ten years ago I signed up, trained and ran my first 5k. Very slowly. But it was a start....a start that motivated me to run more, to prove to myself that I could do it. This fueled the fire in me and pushed me through numerous 5ks, 10ks, half marathons and even one amazing (slow) marathon experience in NYC.
Now I want to do more; I want the running to mean more. Running is symbolic of overcoming challanges. I've overcome very superficial challanges to reach my running goals. But there are people in this amazing world that overcome very real, remarkable challenges everyday just to survive.
Sadie is one of those people; Sadie is a little girl that has overcome more adversity in her precious 2.5 years than most of us can imagine in a lifetime. Sadie is an incredible inspiration to me and I hope to you too.
On October 28, 2011 Sadie was born at 4 pounds15 ounces, 17 inches. She was a tiny little angel delivered to this earth to touch the lives of so many. Sadie's nearly 2.5 years have been a courageous battle fighting illness with her family by her side enjoying and appreciating each and every day of her precious life.
After a battery of tests and endless questions, Sadie was diagnosed with pontocerebellar hypoplasia (PCH), pontine tegmental cap dysplasia (PTCD), and mitochondrial disease.
PCH is a group of related conditions that impact brain development causing problems with movement, delayed development and intellectual disability. PCH is a very rare disease and most impacted by this horrific disease live into infancy or childhood. But Sadie is a fighter....every day she fights.
PTCD is a non-progressive disorder characterized by significant development delay, cranial nerve dysfunction, and malfunction of the hindbrain causing hearing impairment, ataxia, language and speech disorders, feeding and swallowing difficulties, heart malformations and facial paralysis. The cause of this condition is unknown.
For many of us, we tend to live in a world where ignorance truly is bliss, a world where we find beauty in the unknown. As a parent struggling to understand a child's illness and desperate to find reasons and cures, the unknown is unaccapble, and ignorance is anything but bliss. In early March, after yet another battery of tests, it was revealed that Sadie's initial diagnosis of Mitochondrial disease no longers appears accurate. Sadie was diagnosed with another genetic abnormality, Cornelia de Lange disease.
Regardless of the evolving diagnosis, Sadie's family refuses to give up hope. Like Sadie, they are fighters. And they fight every day to ensure their precious baby girl has the best treatment and best quality of life possible.
At 2.5, Sadie remains on a feeding tube, is unable to hear and has hypotonic core muscle strength making it difficult to sit up on her own, among many many other complicating factors.
But she smiles. And makes precious noises. And her sisters love her. And her parents adore the baby girl they created. And her family and friends and even strangers all know that Sadie is with us for a reason. She is an angel and we are thankful for every day and every step in her journey.
This spring I'm running to help raise awareness for children suffering from rare diseases. I'm running to help raise awareness of the struggles--emotional and financial--that families of sick children face. I'm running to raise funds to help Sadie's family continue to provide the medical treatment she needs to better understand her condition and improve her quality of life.
On April 13 I'm running the Gazelle Girl half marathon in Grand Rapids in Sadie's honor. I hope you will consider making a donation to support my cause and Sadie's journey. Join Team Sadie!
For more information about Sadie's journey, please visit her Mom's amazing blog Just Wait and See.
Hugs to all! And thank you for your support!!
**This is not a non-profit organization. These are donations that will be given directly to Sadie's family to offset Sadie's care and medical expenses. I came to know about Sadie through one of my son's teachers--Sadie's grandmother. An amazing wonderful woman that has supported me through some of my most challenging days as a single Mom. She is a truly remarkable and when I learned about her granddaughter Sadie I wanted to do anything I could to help support her family. If you have any questions, please don't hesitate to contact me directly.**
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