Super Kaylee!

Super Kaylee in front of sunflowers

Super Kaylee in front of sunflowers

A story from a Super Mom’s perspective:

“Around the age of 4, Super Kaylee began having unexplained falling incidences and some cognitive regression. She would randomly fall. Sometimes it was a little fall, but most times it was a big fall while playing. We always feared she would end up in the ER. It was so difficult to let her just go and be a kid. Then, not knowing why she had cognitive regression scared us. Some days she knew everything a kid her age should know, and other days she would be more like a 2-3 year old.

This was the beginning of a 2.5 year battle of testing and visits to specialty doctors to find a diagnosis. We finally received the diagnosis on February 18, 2020 after her geneticist fought to get the proper genetic testing. Super Kaylee has a rare neurodegenerative disease called IRF2BPL.

Yet Super Kaylee also has a creative imagination and a fighting spirit that just shines for everyone to see. No matter what obstacles she faces, she almost always has a smile. She cares so deeply for the things that are important to her and she captures the hearts of all who meet her. I am in awe of her! Summer of 2019 we were at our summer home in North Dakota where she ran around in acres of green grass. She loved digging for worms and searching for bugs. She was trying to learn how to ride her bike. She loved dancing and was so proud of her ballet performance she did in the spring (despite needing a little help from the other girls). She began a love for horses last summer and was on a quest to find and pet all the horses.

Within a month of our extended summer ending in September, however, she became dependent on a wheelchair 50 percent of the time and a walker the rest of the time by the end of October. Super Kaylee struggles with losing her abilities to walk and talk, but everyday she tries to overcome this. She still tries to find ways to dance even though her legs don’t let her move like she used to. She still tries her best to sing her favorite songs. She has found ways to move around the house even though she cannot walk unassisted. She amazes us everyday with her courage and bravery. 

Despite all the loss she has had in such a short time, she is still so positive. She finds joy in so many things every single day. She grabs people and brings them into her amazing creative world of fairies, mermaids, princesses, unicorns and horses with such ease. Super Kaylee has two siblings. Her younger brother Colton tries to do things just like her so that she doesn’t feel left out. He will scoot around the house after her instead of walking. He sits with her in the chair when she is watching TV. He also tries to help take care of her the way he sees their older sister Taylor help.

I want everyone in the world to know Super Kaylee’s story because she has so much to share still and so much love to give and so many smiles to spread to others.”

–Super Mom Tanya

0 replies

Leave a Reply

Want to join the discussion?
Feel free to contribute!

Leave a Reply

Your email address will not be published. Required fields are marked *