|Rett syndrome is like having Parkinson’s, Autism, Cerebral Palsy, Epilepsy, Breathing abnormalities, and Anxiety all wrapped up in one little girl. Can you imagine? Here’s Macy’s story from her parents:
“Macy was born happy, healthy and ready to bring joy to everyone on January 9, 2015. She smiled, cooed, rolled over and did exactly every milestone on time, until 6 months of age. She began to fall behind, she couldn’t sit up on her own, crawl, kneel, or even pull to stand, not because she didn’t try, but because her body wouldn’t let her. Our family watched as children ran and played in different areas as Macy watched. Our hearts broke to see this. June 20th, 2016 we had our answer as to why this was occurring for our daughter, she was diagnosed with Rett syndrome. We were shattered, devastated beyond belief and gut punched! HOW and WHY we asked time and time again. It took awhile and we went through a grieving process of the child we thought we would raise to come to where we feel and stand now.
Macy blessed us, she changed us, she grew us in more areas than we knew were possible! We began a yearly fundraiser for the community to learn more about Rett syndrome and how they can welcome Macy and the other children in with inclusion. We raise funds for research as the research being done will not only help the diagnosis of Rett syndrome but open doors to Parkinson’s, brain trauma, autism, and many other neurological disorders. She began therapy and preschool at Lee Ann Britain and our family worked hard to make sure Macy was included and was able to play with other children. Macy was one of the first children to get in the harness system and be on a play kitchen level with others. I cried, i’ll never forget this moment! I cry as I write it! I as Macy‘s mom have gone on to work for the foundation Rettsyndrome.org as the Family and Community Engagement Manager. Macy guided me into helping other families navigate their way through this diagnosis but also navigate this new world of inclusion and how to lead this direction. She gave us the strength and guidance without speaking a single word, that is beyond overcoming adversity, that is living it!
As Macy grows and becomes heavier for lifting we struggle with movement and strength to lift her in and out of her car seat as well as loading and unloading her wheelchair multiple times daily. We counted one Friday, 12 times! Twelve times I lifted her in and out of the car seat, all 40 lbs of heavy weight, 12 times I lifted her 100 lb + wheelchair in and out of the van, that is 24 times in one day of lifting more weight than anyone normally does all while trying to be safe and not hurt her or myself. Until I did, I hurt my shoulder, I had surgery and am still recovering to this very day because a parent like myself doesn’t get to stop. A parent’s healing is always elongated as our children still need care as they aren’t able to care for themselves. This is why a gift of a wheelchair lift for a van would be priceless to our family! We could get back to being on the move, going to parks, out to dinner, going to a Royals game, to therapies and Dr. visits all something a family should be able to do with some ease.
Macy has the ability to bring such joy in the room. Her expressive eyes and loud giggle surround you before you can say BOO! She loves to be scared and thinks it’s hilarious to hear you sneeze! She belly laughs and brings you to a rolling belly laugh with the flash of an eye. She loves to hear laughing and wouldn’t miss a party, such a social butterfly she is. She loves The Loud House cartoon, watching the Royals games on her grandpas lap, and going to school to swim! My favorite quality is the strength of Macy. She uses not just physical strength but the internal strength and grit to keep moving forward every single day with a smile on her face. We are grateful for your consideration and inclusion you drive in the community!”
Macy – Variety partners want to help! It’s important to keep all kids and their caregivers safe – won’t you help us make this wheelchair lift a possibility for Macy and her family? Donate today at www.varietykc.org/donate