Extra Life
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http://www.extra-life.org/participant/Smiths
Dear Fellow Bloggers,
My husband and I are on a mission to save kids through video games, and we need your help.
Our local Children’s Miracle Network Hospital (UH Rainbow Babies and Children’s Hospital) treats thousands of children each year, regardless of their family’s ability to pay. These kids are facing scary stuff like cancer, cystic fibrosis, and injuries from accidents to name just a few.
We are lucky enough to have a healthy baby girl, but it is reassuring to know that the hospital is there if she ever were to need it.
We are also happy to participate in this event because of the care that Rainbow Babies has and is giving to a dear friend of ours, Emily. We would like to tell you a little about Emily and how she has inspired us, but first let us tell you more about the Extra Life event.
On November 2nd, 2013, we will be participating in this huge worldwide celebration of the social impact of gamers like us and it’s our sincere hope that you’ll find it in your heart to support us with a monthly pledge or one-time gift that will go directly to UH Rainbow Babies and Children’s hospital.
Your donation is tax-deductible and ALL PROCEEDS go to help kids.
Last year, Extra Life raised more than 2 million dollars to save kids, but in 2013 our goals, just like the needs of the kids we serve, are much, much higher.
We can’t do this without your help. Donating online is safe and easy! To make an online donation please click the "Support This Participant" button on this page.
Thank you for caring for our kids!
Super Emily
Emily and her family are close friends of ours; in fact, Emily’s parents are our daughte
r’s Godparents. So, Emily means a lot to us. When she was just four months old they noticed an arching in her spine. The first thoughts were a growth or problem with a muscle. A Rainbow Babies’ pediatric Orthopedic Specialist was able to reveal that it was a Gibbus deformity of her L2, which alone would not have been a huge problem, but paired with some eating problems that Emily was having, the Orthopedic Specialist asked the family if they had ever heard of Mucopolysacchiardosis (MPS). Shortly after Emily turned five months they had a confirmed diagnosis of MPS, specifically MPS1 – Hurler Syndrome.
Hurler Syndrome is a rare genetic disorder that affects one in 100,000 people. It is a storage disorder where the enzyme, which normally breaks down the mucopolysaccharides dermatan and heparin sulphate, is missing. These mucopolysaccharides build up in all tissues in the body causing progressive deterioration and eventual death. Currently, there is no cure for Hurler Syndrome. Only some of the symptoms can be treated. So far, Emily has undergone numerous tests, surgeries, enzyme treatment, chemotherapy, and in August of 2011 Emily had a cord blood transplant (similar in concept to a bone marrow transplant). Transplant day is considered a second birthday and we were very blessed to celebrate Emily’s second transplant anniversary just this past August. All things considered, Emily is doing very well. She has orthopedic and growth issues among other things, but she is a brilliant and happy little girl. She loves super hero capes, music, books, and playing with her big sister. She is our inspiration for participating in Extra Life.
Support us!
http://www.extra-life.org/participant/Smiths