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World Down Syndrome Day 2020 – Day 4

Knowing Amy

Julie Fisher and Tina Naughton are friends and have been for many years. Their older children were at school together. Through this friendship, Julie also knew Tina’s younger daughter Amy, who has Down syndrome, and had spoken to Tina at different times about what is was like when Amy was born. She knew the story of how receiving the diagnosis at birth had been difficult for Tina as she didn’t know what to expect when given a Down syndrome diagnosis for their baby girl.

Julie saw that despite the initial shock for Tina, life with Amy was good. She saw that Amy was a valued and loved part of the Naughton family, just like her siblings.

Knowing Amy meant that when Julie was pregnant with her third child, she also had an understanding of what the different prenatal tests and screens were designed to look for.

During her ultrasound, Julie knew that a high nuchal fold measurement was a marker for Down syndrome so when her measurement came back just under the cut-off, she decided to have an amnio despite the medical professionals seeing no obvious indicators for Down syndrome. 

She decided to get a definite result because, if there was a positive diagnosis for Down syndrome, she wanted to be able to tell everyone in their family and friendship group before the birth. She wanted everyone, including herself, to work through their feelings beforehand and be prepared so that everyone would be happy for the birth of a new child into their family.

Knowing Amy also meant that Julie could decide what practical and medical information she needed to prepare for a child that may have Down syndrome.

Julie says that this knowledge and the lived experience of knowing Amy meant that even though she was still overwhelmed and emotional when the results of the amnio came back positive, she could see a future for him, and she knew his potential.

Knowing Tina and Amy meant that she could join the support group Tina ran and meet many more families with children with Down syndrome of all ages ranging from babies to primary school aged children. She also was able to involve her whole family so they could meet the new community they were going to be a part of.

Amy and Darcy have grown up together only five years apart. Amy is now 18 years old and Darcy is 13. Amy doesn’t use many words to articulate how she feels about Darcy, but Tina says that her body language is undeniable. She loves spending time with Darcy and her face lights up when she sees him. They have been a great support to each other at different times especially at the StepUP! fundraiser walks where Amy encouraged Darcy to keep going one year, and Darcy encouraged Amy to keep going another year.

Knowing Amy meant that Julie and her family started their life with Darcy from a place of optimism and possibility. Amy and Darcy are a new generation of friends and support for the Fisher and Naughton families.

You can read more about this story in Julie’s book, The Unexpected Journey.

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