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“She is Fiona GRACE McElliott, because we have her by the grace of God.”
Fiona McElliott, Partial Trisomy 17, Dahlonega, GA, USA, 7/8/2002
Fiona is a happy, loving 9 year old who loves life to the extreme. She is Fiona GRACE McElliott, because we have her by the grace of God.
When I was 10 weeks pregnant with Fiona, I began bleeding heavily and suddenly from a placental abruption. I was rushed to ER on a stretcher only to find out that Fiona was thriving despite. The doctor there told me with the extent of the abruption, there was little hope. He said not to bother putting myself on bed rest, as it would not help. I put myself on bed rest anyway, and prayed away. Fiona was born at 38 weeks with a 9 on her Apgar score, weighing 5 lbs 10 oz.!
She developed like most children her first year of life, babbling lots and very alert. But her muscles were so weak. By age two, when she was not really talking or walking, we began tests. Just before her third birthday, Fiona was diagnosed with Trisomy 17, on the p arm, 13.1-13.3 duplication. The geneticist said they knew very little about this and did not know what to tell me to expect.. that she may never walk or talk.. that we just didn’t know. I found out from the Office of Rare Diseases that there were 6 people ANYWHERE registered as having Trisomy 17 and surviving. We did heart and kidney and hearing tests and all came back normal.
Just before Fiona’s birthday, she began walking! She was very frustrated at her inability to communicate at this time though, and screamed A LOT.
We enrolled her in a special needs preschool and worked hard with therapists. I was a private drama/music teacher, but went back to school to get my Masters in Special Education to learn how to better teach Fiona.
Fiona’s muscles grew stronger and stronger, and, with the help of teaching her sign language, Fiona began to speak! Her physical therapist released her, claimed her “caught up” physically!
Fiona went on to attend regular state Pre-K (with max assistance), but then we ran into a dead-end when it was time for her to go to Kindergarten. We didn’t feel she was ready (she was not yet potty trained, etc.) but couldn’t find a local private Pre-K that was willing to take her. About this time we also struggled as our church was unable to accomodate her in church school and dentists refused to see her (but due to lack of a medical reason, special needs dentists wouldn’t either). We struggled through all these little issues. We homeschooled Fiona for one year of Kindergarten. We then enrolled her the next year in kindergarten in public school. She was placed in a self-contained class where the other children were non-verbal. By this time, Fiona could communicate quite well to those that understood her. But going into school, she reverted back and became much less verbal and began a lot of undesireable behaviors. We found students to be kind to her but many teachers to be unkind and treat her as if she was not a person with feelings and thoughts. They were also very judgmental of us as parents as if we were to blame for any of her delays. There were a few very kind teachers as well of course…
The next year, we enrolled Fiona in a different public school and she stayed in a typical kindergarten class most of the day (her third year of Kindergarten). SHE THRIVED!!! Fiona began to read! To spell! The students and teachers loved her! She is extremely social and became quite the popular young lady. Fiona joined a competition cheerleading team and worked hard on balance and spatial issues in hippotherapy.
First grade also went beautifully. Fiona joined a special needs baseball team and began some Special Olympics programming (Jr.) as well. She attended a three-day “mini camp” at Camp Glisson for children with special needs, in a traditional camp setting, and integrated with the typical campers her age. She LOVED it!
Second grade brought new challenges with more difficult coursework and some bullying. But it also brought a little girl that is now able to tell us things that happened during her day (some abstract thought!!), a very basic understanding of some math in school, weight gain, growth, and independence! Fiona loves to try things on her own now and is learning how to use the microwave, set a table, take a shower, and so many things that seemed years and years away just a short time ago.
If you look up Trisomy 17 on Google, you see like 0% survival rate… but Fiona defies that! We hear there are now 49 identified Trisomy 17s on there.
We fully intend that Fiona one day, although she will likely never live alone, will have a beautiful life. Have a simple job. Bring joy to many, as she does to us now each and every day.
Fiona lives with her Father and me, her big brother Mitchell (age 12), little brother Luke (age 7), and her little sibling in uterus (14 weeks), in Dahlonega, Georgia, in the mountains.