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To the Teachers Who Were Willing to Learn About My Daughter’s Rare Disease

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On Rare Disease Day, I can’t help but think about all the people who have come into our lives due to our daughter, Abby, being diagnosed with Sanfilippo syndrome. I have spent numerous hours over the past few weeks focusing on Abby, Sanfilippo syndrome and how to raise more awareness for rare diseases. As I have tried to come up with creative and catchy ideas, I see the faces of the many people who have loved Abby along the way: her teachers.

The first that come to mind are the teachers Abby had before we ever knew she had a rare disease. They started seeing a change with her and became concerned. They were there when we thought we were dealing with a developmental delay, and they were there when we found out it was so much worse. They were there when we cried at IEP meetings trying to explain Sanfilippo syndrome and what her future entailed. They handed us tissues and cried along with us. They tutored Abby after school for two years while we desperately tried to maintain the skills she had. They dug deep to find out what she loved and what made her tick, then used those things to keep her engaged and motivated.

I look back on those teachers and feel so much love and appreciation. I know in my heart they truly loved her, just as if she was their own. During third grade, we moved and Abby transferred to a new school. My biggest fear was starting over with a new set of teachers and a new Exceptional Children’s program. I was fearful of how Abby would be accepted by the new students and how patient the new teachers would be. When describing Abby’s behavior and personality, I often describe her as quirky, impulsive and stubborn with some obsessive-compulsive tendencies. Thankfully, my fears were quickly put at ease. There was immediate acceptance and understanding. We found her new teachers to be patient with her, while having an openness to learn about her disease. Abby quickly bonded with her new teachers and found acceptance with her new friends.

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Over the past two years, we have had more support than I could have ever asked for. The teachers, parents and students participate in Rare Disease Day, MPS Awareness Day, have purchased t-shirts and bracelets to support our foundation and have volunteered at our fundraisers. I feel so at ease sending Abby to school knowing how much she is accepted and understood there. I truly feel that the teachers at her school model and teach acceptance of others’ differences. What a wonderful attribute these students are learning — one that will only help them as they make their way into middle and high school.

So to all of the teachers who have entered our lives before and after Abby’s diagnosis with Sanfilippo syndrome, I thank you from the bottom of my heart. You are truly one of the most positive experiences we have had after being faced with the mortality of our daughter. Thank you for loving Abby as if she were your own. Thank you for your patience and keeping her motivated to learn. Thank you for continuing to teach her. Thank you for not giving up on her.

For more information about Abby and Sanfilippo syndrome, please visit

Follow this journey on Strengthening the Soul.

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Originally published: February 29, 2016
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