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)
Anonymous said…
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)
Anonymous said…
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.
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.
Anonymous said…
I've watched a rerun of the Show undercover Boss, where I saw your dad. He seems like such a sweet guy and it made me cry when he talked about his grandchildren. Never having heard of the ilness I started to google and eventually came across your blog. You guys are a remarkable family, the strenght that you and your husband have is incredible. I wish I knew what to say to make you feel better, but I don't think these words exist. Wishing you all the best. Greetings from Switzerland.
Anonymous said…
I also watched the episode of undercoverbosses. However, I am very aware of this disease and am currently performing undergraduate research in regards to Sanfilippo. Seeing your father talk about how much love he has for these two wonderful children has really made this research worthwhile. You have two amazing children and I hope someday in the future we will be able to find a cure for this horrific disease.
Anonymous said…
Your children are sweet angels and your strength inspires me. Thank you for sharing your two precious children with all of us. God bless your family!
Comments
What beauty shines here in the midst all the brokenness.
You are all so precious.
~Charity
Lyn Smith (a friend and former colleague of your mom)
Susie Reed Clark (sister of Ben and Katie Reed)
-Laura Darrow
Fort Vermilion, Alberta
Never having heard of the ilness I started to google and eventually came across your blog.
You guys are a remarkable family, the strenght that you and your husband have is incredible.
I wish I knew what to say to make you feel better, but I don't think these words exist.
Wishing you all the best.
Greetings from Switzerland.
Thank you so much for sharing.