Ashtyn’s Story Posted on February 23, 2023 by melelllan Part VI...

Ashtyn’s Story
Posted on February 23, 2023 by melelllan
Part VI of this series demonstrates the human capacity to take adversity and find the good. In the Rett world, adversity comes at us from so many angles, but, if we’re lucky and if we have open hearts and minds, we can be grateful for those moments of joy and comradery that peek their heads above the fray.

Ashtyn’s Story by Lena H.


Ashtyn was diagnosed in September of 2014. I remember the pediatrician telling me when we got her diagnosis that this is going to change your family’s lives. He was right! It did change our lives for the better!

I noticed early on that Ashtyn was not meeting her milestones; since I already had a child, it was easy to see she was not progressing like her brother did. The pediatrician wasn’t concerned until she reached 15 months and wasn’t walking yet. The doctor recommended therapies and genetic testing. We put Ashtyn into OT/PT and Speech therapy; Ashtyn made very little progress and those therapists recommended genetic testing as well. The testing came back positive for Rett syndrome.

Since Ashtyn was transitioning from a 0-3 program at Missouri First Steps and into The Early Childhood Center, I called the social worker at the center, and she agreed to go with my husband and I to meet with the doctor. He discussed what kind of life Ashtyn would probably have-a shortened life, the need for 24-hour care, regression. Like I said in the beginning, he said, “this is going to change your lives.”

He referred us to a neurologist at Children’s Mercy Hospital. I like that when we see him, he always has residents come in to learn more about Rett syndrome. During one of our visits, he said Ashtyn is his Unicorn! – she is on the milder side of Rett syndrome.

When it came time to decide which school to send Ashtyn to for kindergarten, we had two choices, the general education kindergarten or one specifically for special needs children. I spoke with her pre-school teacher and social worker, as well as her therapists at Ability KC, which they recommended. They ALL went with me to both schools! I asked, “How will I know which will be the best fit?” They all told me, “You will know!”; they were right. I chose the school for special needs children, Maple Valley.

When we had Ashtyn’s parent teacher conference in November, her teacher said that Ashtyn has been becoming braver, she is trying new things. She said if she could think of a word that best describes Ashtyn it would be “JOY”. Ashtyn brings so much JOY to the classroom and the entire school. She always has a smile on her face. Her laughter is very contagious!



2017 was a very difficult year for our family. My mother, who helped with the children, had a stroke; work schedules had to be rearranged and therapies became a burden. I began to question if it was worth it to continue therapy. Then one day during a speech therapy appointment, Ashtyn chose a song to listen to-She picked Frozen of course. Right?!? She started dancing in her chair. That was the sign I needed to know that it was all worth it. I started crying happy tears!

In June of 2020 my mom needed hip surgery and recovered better than the doctors ever believed she would, “I take care of the kids,” she said. “All that physical activity must be helping me heal!” That’s when I started saying, “Mom helps Ashtyn and Ashtyn helps Mom!” Mom is 84 years old now and is still taking care of the kids. She says they help keep her young.


You know there are ups and downs to everyone’s lives. Sometimes some people have more ups and downs than most. And that is okay. It makes those ups more of a treasure and you don’t take things for granted. When we talk to our friends about Ashtyn, they have a tendency to say how special we are as parents, not everyone could deal with a special needs kid like we do. I tell them we do what we have to do. If they had a special needs kid, they would do the same thing.

Because of Ashtyn, we have met so many people that we never would have met- her teachers, therapists, and so many friends! Ashtyn brings so much joy when she comes into a room. She has a contagious smile and laughter. I often think back to when we got Ashtyn’s diagnosis of Rett Syndrome and what the pediatrician said to me- This is going to change your family’s life. He was right!