Here is a little video montage of Waverly & Oliver over the years. Enjoy.
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Get To Know Us
Purpose
What is MPS IIIA / Sanfilippo Syndrome
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About Me
- Shannon
- Washington, DC, United States
- What can we say...boy meets girl. We fall in love. Marry. 2 kids & 5 hearing aids later we had the wonderful experience of living in London. Then, in the spring of 2008 both of our kids were diagnosed with MPS III A, otherwise known as Sanfilippo Syndrome. It is a fatal genetic disorder. We moved back to the US in summer 2008. This is our journey.
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8 comments:
Beautiful video...I'm a friend of a friend and am so inspired by your love, determination, and perseverence. Voted 3 times today and will continue to.
What a precious gift your children are to you and everyone of us. Thank you for sharing them with us. They are beautiful! Eileen from Michigan
Stunning, Shannon.
What beauty shines here in the midst all the brokenness.
You are all so precious.
~Charity
beautiful sacred images friend...much love to you!
Thank you for sharing your beautiful children with the world, Shannon! And thank you for your relentless efforts to make a difference for other children and their families. Your strength, love, and perseverance are amazing! You and your family will be in my prayers and I will continue to vote three times a day, every day for Team Sanfilippo in the Pepsi Refresh Project.
Lyn Smith (a friend and former colleague of your mom)
I just heard the fantastic news today that Sanfilippo syndrome won the funding through Pepsi Refresh! We have been voting! I am so thrilled for you! I am moved beyond words for your love, hard work, and sheer determination to bring awareness and funding to this terminal disease. I hope you find comfort in knowing that I am praying for you and your kids. With every piece of my heart, I am praying. I'm sure your children aren't able to thank you yet, so on their behalf... thank you.
Susie Reed Clark (sister of Ben and Katie Reed)
I have been reading your blog for a few years now and I don't think I have ever commented, but I wanted to let you know that I think your strength and perseverance are unimaginably admirable. I do not personally know you or Waverly and Oliver but the strength that your blog and their little lives give me on the best of days and the worse of days is too great for words. Through you and your willingness to share your doubts, fears, happiness, and milestones, Waverly and Oliver are changing lives just for being themselves. I definitely appreciate the smaller things in life after becoming an avid reader of your blog, and while you may not know everyone who reads your blog, I'm certain there are others like me who read it in the shadows and support you from their own corner of the world.
-Laura Darrow
Fort Vermilion, Alberta
Thanks for your comments, everyone. It means so much to me to read about the ways Waverly & Oliver have impacted your lives. It gives some purpose to all of this tragedy.
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