5 Years Later

Sweet boy. My Oliver. I took this photo the night he was diagnosed. 5 years ago today.

Waverly's diagnosis had come 1 month prior. In my heart, I knew the doctor would confirm Oliver also had this horrible syndrome. Matt, my parents and friends, were all sure he would be spared. My mom instinct knew. Waiting 4 weeks for confirmation was the most difficult time in my life. I was already reeling from Waverly's diagnosis. We had battled our insurance - and won - for the chance to take the kids to Duke to see specialists about a HSCT. We immersed ourselves in learning all we could about Sanfilippo Syndrome. I spent hours on the phone with other families. Hours online reading family blogs. As much as I *knew* Oliver had it, the confirmation was devastating.

My cell phone rang as I was walking with the kids in central London. We were on Oxford Street. I had just picked Waverly up from preschool and we were enjoying a nice walk. My cell rang. I carried it in my hand volume on high, anticipating Amy's (our neurologist at CHoP) call. From her first word, I knew she was delivering bad news. If the test was negative, she would have been laughing and screaming in celebration. She was sober and straightforward. I dropped to my knees and cried on the corner of Oxford and Audley.

I remember calling Matt at the embassy. He also had his cell with him at all times, convinced I would be calling him with good news. I was just a few blocks from him, he was on his way. He got up from his desk, went to his boss and she knew we had received bad news. I remember hugging him, climbing into a taxi to head home. We both cried and stared at Oliver, riding comfortably in the bottom of the Phil & Ted's buggy.


Now, here we are 5 years later. Still two beautifully happy kids by our side. We have survived 5 years of living with this dreadful disease. We have committed ourselves to creating memories, to enjoying each day we have with the kids. We may not look like many other families and our lives are certainly different. It has not been an easy journey. We have been grieving for 5 years, anticipating the greatest loss a person can experience. Twice.

I would give everything to make Waverly & Oliver healthy - to free them from Sanfilippo.


Thank you for sharing, Shannon. Thinking of you and Matt...
Shannon, I started reading your blog 5 years ago, right after Oliver was diagnosed. A friend of ours, Ann Snow-Schmidt shared it with my mom who shared it with me. I appreciate you being so open and honest with the world about what this disease is doing to your children and your family. I pray that one day a cure will be found, hopefully in time for Waverly and Oliver. Prayers and love coming your way from KY.
Kathryn said…
I can't say I understand what it is like, as far as terminal illness goes. But when I look at my bro, I understand that part of it. Of wishing he could be free of his special needs, have a fighting chance at the overated "normal life".
You guys are in my prayers.
Anonymous said…
Always thinking of you and your wonderful gifts of Waverly and Oliver. I have been following your blog for around 6 years. Always praying for you. You and your children are a real blessing to me. I want you to know that. Prayers always being sent on your behalf. Eileen
PK said…
I've been following your blog for years - I don't remember how many. I am continually amazed at your ability to make the best of things and find joy in even the smallest of things. Waverly and Oliver are blessed to have you and Matt for parents.

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