This story is a feel good story and a tear jerker, both at the same time. We need your help to ensure a happy ending!!
Aleena Hope Miller is a little girl that continues to beat the odds and it is only with everyone's help that we can continue to see beautiful young children like Aleena beat the odds like this. She suffers with a disorder called Spinal Muscular Atrophy Type 1. She will be 4 years old in February. Keep in mind, most children with this illness never make it to their first birthday. Despite all of the close calls, her mother has fought for her health and Aleena herself is a fighter that just won't give up! Here are some pictures of this miracle girl:
So, you read this story and you think, "Wow, that's amazing!" Well, this story is amazing. But, it has a VERY scary side to it of which most people are COMPLETELY unaware. This could EASILY be your child. And you wouldn't know it until your child was a few months old. Here is the hard truth about Spinal Muscular Atrophy (SMA):
Spinal Muscular Atrophy is the leading genetic killer of babies and toddlers under the age of two. Did you know that??
• SMA is a genetic disease characterized by a degeneration of motor neurons in the spinal cord.
• SMA rapidly destroys a child's muscle control and strength, leading to the progressive inability to walk, stand, sit up, eat, and ultimately, breathe.
• There are three types of SMA (I, II and III). SMA Type I is the most severe. In 80% of affected Type 1 children, death occurs before age one.
• An estimated 1 in 6,000 to 1 in 10,000 infants are born with SMA.
• 1 in 35 people are carriers for SMA. Imagine you go to a popular restaurant for dinner one evening. Six couples in that restaurant could be completely unaware that their first child could be born with a deadly illness!
Here is what is exciting, though! SMA is the closest neuromuscular disorder to a cure than any other! There could be a cure within 5 - 10 years! But, there's a problem. A $30 million dollar problem. It would take $30 million dollars to fund the research necessary to cure this illness -- per year. Stephanie Miller states, "Leading researchers estimate a treatment for SMA could be reached in 5-10 years with funding of thirty million dollars annually."
Sound hopeless? NO! Not at all!! If everyone that saw this blog went to www.hopeandlight.org and contacted Stephanie Miller (President of this non-profit seeking funds for a cure) and asked how they could help, this problem would be eliminated in no time!!
I have to admit, this is my favorite charitable organization. It is near and dear to my heart because my dear husband of nearly 5 years also suffers with Spinal Muscular Atrophy. The amount of frustration that he experiences daily is enough to move me to tears, though he handles it so well that I find it hard to be sad or complain! He cannot walk, he cannot sit up alone, he cannot sit on the couch with me to watch movies, he cannot do many of the things that most of us take for granted. He has Type 2, which is not nearly as severe as Aleena Miller's condition, but why should anyone have to suffer in any capacity when we are so close to a cure?
We know MANY people that suffer with SMA. This is NOT a rare disability! This is my husband at age 11, just before he had to get a wheelchair (Type 2 or 3 - the doctors still aren't sure) and now as an adult:
The most maddening part of all of this is the small portion of medical bills that insurance companies pay. My husband needs assistants twice a day, nearly every day of the week. Insurance covers none of it. We rely on organizations like The Hope and Light Foundation to offset the medical bills. And we are so close to a cure. So, for the sake of the children that are soon to be born to unsuspecting parents and for Aleena's sake:
A beautiful little girl that loves wagons, loves to dress up like a fairy, loves to pretend to be a chef, though she can't speak, swallow or breathe without the help of a machine - let's give these children a chance! She's no different than you or me except that she needs a chance. We aren't aware of the prevalence of this illness because most of these children's immune systems are so compromised that they can't leave their homes or they simply don't make it to their first birthday. LET'S CHANGE THAT!
Please contact Stephanie Miller (www.hopeandlight.org) to see how you can help. You can hear her interview here on the second half of this radio interview: www.radiosandysprings.com/fog (October 16 interview). Please listen to her story, how you can help and more about The Hope and Light Foundation. It is moving, inspirational and you'll be so glad you chose to work with this charitable organization.
Thank you SO much for reading this blog!
Your favorite "KooK",
Angela McKeller
