Wednesday, September 15, 2010

Remembering Kenzie

In early December last year, I found Kendra's blog, and was immediately drawn to her family, and her little angel, Makenzie. Days after I started looking for updates from Kendra hourly, Kenzie passed away and I was one of thousands who cried that day for The Webster Family. Kenzie was 4 months old. She was beautiful, amazing and incredibly loved.

Kenzie was only here for 4 months because of an awful disease I had never even heard of before - Spinal Muscular Atrophy (SMA). After hearing about Kenzie and praying for her hour after hour, and while continuing to this day to pray for her dear parents and family, I knew I needed to find out more about this disease. Thankfully, Kendra was very open about SMA and through her and my own research, I've found out about so many more tragic stories just like Kenzie's.

*SMA is the #1 genetic killer of young kids.

*It occurs in 1 out of 6000 births.

* 1 in 40 people carry the gene for SMA unknowingly. Most have no family history.

Babies with SMA are born perfectly healthy after perfect pregnancies. It isn't long before they start to deteriorate, however. SMA causes lower motor neurons in the spinal cord to break down and die. Without those neurons, the brain can not control the muscles, which causes the muscles to weaken. Eventually, these babies can not walk, eat, sit, stand, swallow or even breathe. While their bodies waste away, these babies remain to have brain functions that cause them to be alert and aware. Currently, there is no treatment or cure for SMA, but researches are very hopeful that with funding, a fix is just over the horizon. Babies with Type 1 SMA typically do not live to see 2. Kenzie didn't live to see 5 months.

The Webster's story breaks my heart every time I think about it. I understand that there are SO many diseases out there reaching for cures. I am a strong advocate for JDF as my nephew is a diabetic and has been since he was 2. But every time I hear about SMA and Kenzie, I want to DO something. Now. These babies aren't even given a chance. And, what's worse, IT COULD BE HELPED. They CAN have a chance. They CAN live a life. Their parents WILL see them grow up. They HAVE to. Research is pointing in ALL the right directions, they just need more funding, and maybe SMA will no longer be the #1 killer of young children. Maybe it will no longer BE the killer of children, and then we can focus our attention elsewhere. But for right now, SMA NEEDS to be cured. NOW. Before another child is taken before she should be. Before another parent sees the day The Websters have seen.

6 months after Kenzie passed, her parent's threw an amazing event to raise money for research. They had volunteers, donators, a great day! They raised over $15,000 for SMA research. $15,000!!!! Two parents who are ON A MISSION to make sure no other child has the same fate as their Kenzie. They have started MRW and every day, I watch from afar as they do great things in spite of their loss. They AMAZE me. They INSPIRE me. They are SO much stronger than I can ever imagine I will be, and I aspire to be as motivated, strong, and admirable as Kendra.

The least I can do is blog their story, pass on Kenzie's legacy, and HOPE and PRAY for a cure to this awful awful disease. Right now, YOU can help too. Please do. PLEASE take a minute of your day, and VOTE for the Gwendolyn Strong Foundation.

Go to VOTE for the Gwendolyn Strong Foundation. VOTE today. VOTE tomorrow. Vote EVERY DAY until September 29th.

And if you want to read Kenzie's story, please visit Kendra's blog. She will inspire you too. I promise.

Thanks for voting. Please KEEP voting. And spread the word.


Lori said...

I feel your pain. I had a miscarriage at 6 weeks and people dont even acknowledge that it happened. It's not like it was born. I ended up having to have tow dc's. It was awful.

I will have to go read about this little angel.
Go to Bring the Rain. Its another heart breaking story. I got the book. Its wonderful.

email me anytime....


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