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Mother Thanks Terminally Ill Daughter’s Teachers on Rare Disease Day

Mother Thanks Terminally Ill Daughter’s Teachers on Rare Disease Day

Wife, mother and Registered Nurse Wendy Ferguson’s daughter Abby was diagnosed with Sanfilippo Syndrome at a young age- a rare disease that involves a genetic error of metabolism and that is categorized by mental deterioration, behavioral problems and mild physical defects.

Today, on Rare Disease Day, Ferguson wrote for The Huffington Post to make a special shout-out to the people who she says have helped considerably along the journey- Abby’s teachers.

Ferguson describes Abby’s teachers role in helping determine that Abby was suffering from a rare disease.

“The first [faces] that come to mind are the teachers that Abby had before we ever knew she had a rare disease. Those are the teachers that started seeing a change with her and became very 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,” Ferguson said.

" 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.”

When Ferguson and Abby moved at the start of third grade, Ferguson was worried she wouldn’t encounter teachers who were as committed to teaching and engaging Abby in her special circumstances. She was pleasantly surprised to be wrong.

"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,” Ferguson said.

"So to all of the teachers that 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 that we have had after being faced with the mortality of our daughter.”

Read the full post.

Article by Nicole Gorman, Education World Contributor

3/1/2016

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