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A Rare and Beautiful Joy

Ella was born in 2009 and has been a huge JOY in the life of all who know her. She has been a fighter since day 1. When she was born the doctors suspected that something wasn’t quite “right” with her, but we wouldn’t have an actual diagnosis until she was 16 months old. I remember sitting in the doctors office as he told us that she had a rare syndrome called 9q deletion (now called Kleefstra Syndrome), and that he didn’t really know anything about it. He said that Ella would be our teacher and we would learn from her. He told us that crawling, walking, talking, etc, would be difficult, but not impossible. He also told us that seizures were a part of the syndrome. She began having seizures at 2 years old.
Ella also has a variety of struggles/diagnosis that affect her everyday life. She struggles with constant GI issues, hearing/vision impairment, autism, and low tone. She has been hospitalized several times in the last 12 months.

Ella is full of giggles, smiles, silliness, and stubbornness (in the best way!) She continues to do what we were told she might not do! She began walking at age 4 completely unaided. She is learning to climb and run! Her gait may never look like a typical child, but that’s ok. Ella is who God made her to be and she continues to show us daily the Joy in life, and the Joy in serving God. She is a much prayed for child and I know that God has big things for her life.

Since Kleefstra Syndrome is so rare (around 300 worldwide) not much is known about life expectancy or long-term care. We continue to learn from the best teacher, Ella. To learn more about Kleefstra Syndrome go tokleefstrasyndrome.org

A huge thank you to Larae Photography for these images.
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