|Our daughter, Ava Mae Kloiber, was born on March 23, 2007 and at 3 weeks of age was diagnosed with an incurable genetic disease called SMA (Spinal Muscular Atrophy), Type 1. The doctors told us she would be with us for only 6 months to 1 year, and we made every moment with her a lasting memory. Ava Mae earned her angel wings when she passed away at the age of 7 months.
Ava Mae was a blessing to all and continues to impact people’s lives. Her spirit and will to live continues through the 2 heart valves she donated to 2 infants upon her passing, and also through our family dedicating ourselves in her memory and honor to find a cure for this terrible disease!
Shelley & Jeff (parents to Ava Mae) are lucky enough to have a second daughter, Sydney Ava Kloiber and son, Noah Christopher. Sydney & Noah are both healthy children however, both are carriers of SMA. They don’t have the disease, but it could affect their children if they marry a carrier (1 in 40 ppl). It is our goal to help find a cure for SMA before their child-bearing years so that they don’t have to endure the hardships of dealing with this disease.
We miss Ava Mae every day, and her absence is felt in our heats every day, but we know that she continually watches over us and her spirit & courage lives on in her siblings and through us.
It took 3 years, but we finally finished putting together a video of Ava Mae’s life. You can watch it below or by copy/pasting this link. http://www.youtube.com/watch?v=pPMsKlgg3lw
We wanted to share Ava’s beautiful smile and her life with everyone.
Some Quick Facts on SMA:
-FACT 1: YOU could be a carrier!
-FACT 2: Spinal Muscular Atrophy (SMA) is the number one genetic killer of infants
-FACT 3: It is an often fatal disease that destroys the nerves controlling voluntary movement, such as, crawling, walking, head and neck control, even swallowing
FACT 4: One in 6,000 babies born is affected with SMA
-FACT 5: 1 in 40 (some statistics show 1 in 32) people are carriers of SMA (it takes 2 carriers of SMA to birth a baby with SMA)
-FACT 6: There are 7.5 million Americans who carry the gene which causes SMA
FACT 7: YOU can help!
It is Team Ava Mae’s commitment to help secure funding & resources so that no other families have to endure the hardship of their child passing away from SMA.
We now ask you to help find a CURE FOR SMA!
Please donate to Team Ava Mae in memory and honor of my daughter.
Sincerely, Jeff & Shelley Kloiber