Rett Syndrome

Austin, Primary Picking 1st Shift - Olathe

About two years ago, my family and I endured one of the biggest, most unexpected changes we could have ever imagined. My niece, Macyn, was not developing at a normal rate and was taken to a specialist in Birmingham, Alabama. After multiple tests, we found out that Macyn was diagnosed with Rett Syndrome at 18 months old. Macyn is now in a wheel chair and is unable to speak or participate in daily activities without the help of her family members.

 

My family has grown even closer because of Macyn’s needs. My mom, stepfather, sister and I help out my brother and his wife as often as we can. We all try to make it to as many Rett Syndrome events as we can to build a supportive environment for Macyn. Last year we went to San Antonio and met many other families who were leading the same lifestyle that we are. My family has grown to really depend on one another for strength and support. Patience is the most important lesson that I have learned throughout the last two years.

 

October is Rett Awareness month! Last October, my family helped organize a fundraiser for the Rett Syndrome Foundation. The event brought in about $10,000. This year we hope to make even more money and continue to raise awareness about my niece’s illness.

 

Even with Rett Syndrome, Macyn still gets to do lots of fun things. She goes to a special preschool where she can learn in a way that makes sense to her alongside other kids with similar disabilities. Her school takes the kids on field trips so that the children can experience as much of a normal life as they can. Macyn’s favorite thing to do when we hang out is watch Loud House, her favorite cartoon. After everything she has been through these last couple years of her life, Macyn is still one of the happiest little girls I know.

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