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My daughter Emma never tried to communicate with us before. Now when she wants something she taps really intentionally.
She never used to show any interest in or play with toys. Now she asks for them and can play independently for 15 minutes straight.
Emma couldn’t ride in a stroller, a car, or even a shopping cart. She has extreme motion sickness and she would just vomit – not just once, but repeatedly. Now she loves swings!
Emma couldn’t tolerate noise and was almost constantly irritable. Now her crying has decreased dramatically and she is alert and engaged.
Emma has 4 older siblings, a brother and 3 sisters. Everybody caters to her. Tichenor didn’t just change her life, it changed theirs, too. They say, “Mom, she’s SO smart!”
Emma didn’t make eye contact. Now she speaks with her eyes.
Emma is a different child.
If someone had told me when she was diagnosed that one day she would be doing the things that she’s doing, I never would have believed it.
Emma was developing typically until she was about six months old – then things started to change. We saw several pediatricians who said to wait and see but I have four other children; I knew she was rapidly regressing. Even once I was able to pursue a diagnosis, my insurance denied genetic testing.
Finally I found a pediatrician who really listened to me and when Emma was 4 1/2 years old, we got the diagnosis of Rett syndrome**.
*a progressive disease is a health condition that gets worse over time, some which cannot be slowed or altered with treatments.
**Rett syndrome is a rare genetic neurological disorder that leads to severe impairments, affecting nearly every aspect of life. Rett particularly affects speech, purposeful hand use, and coordination.
This is a syndrome that takes and takes and takes. I was told she would just continue to regress. But the therapists here (Ms. Vanessa, OT, Ms. Lauren, SLP, and Ms. Karsti, PT) have enabled Emma to not only stop rapid regression but to show she is stronger than Rett.
Not only that, but this is the first time that therapists have taken the time to teach ME: to show me how to safely move her if I don’t have help, how to give her a bath in bed now that I can’t lift her, how to communicate with her and how to help her communicate. I’m the one with her 24/7. These are things that I need to know as her mother.
This year I was able to take her to her sister’s middle school open house in a wagon. Leaving the house like this and being in a big crowd – we’ve never been able to do that before. She was so interested in everything that was going on around her. Two boys walked by and stopped in their tracks when they saw her. One said, “Look at her, she’s living her best life!”
If they only knew. She is – she really is. Emma is living her best life, and it’s all thanks to this place.
Tichenor Clinic is a little piece of heaven. Thank you from the bottom of my heart.
Monica, Emma’s Mom
The average cost of six months of weekly therapy at other clinics is $6,000. Tichenor families pay a one-time $10 registration fee for weekly therapy – and that’s it.
Please help support 115 families like Emma’s. Can you make a meaningful gift today?
La versión en español de esta historia se puede encontrar en la página siguiente
