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A Closer Look at RAD21: Baylee


My first thought after I got Baylee’s diagnosis last December was “ nally.” Finally, we know what it is; now we know what to do and where to go from here.

Baylee’s doctor diagnosed her with a photo and an app on her phone. Baylee had some of the characteristics of CdLS, but not the normal facial features, so testing was done to con rm. Of course, I went home and Googled CdLS. I read the information and was thinking, “check, check, check and check.” Long eyelashes, cleft palate, hyper-focused. Baylee didn’t talk until age three. We used sign language for most things, and she would use the word “mom.” She lost the use of sign after she started school since they focused on her verbal skills. We still go to one-on-one speech therapy.

Moving forward, I hope to ensure that she has what she needs, whether it’s the correct pencil or the correct desk height. But I don’t want to over do it either. I have noticed that she has problems with writing, and her hands get tired. I have discussed with her school about her condition the best I can as this is really new and a lot of unknowns.

At seven years old, I don’t treat my daughter any different. I have the same expectations for her as I do my oldest child, and I know she will do it in her own way. But she will do it. Baylee is in karate, and has become stronger than when she started. Her instructor does not treat her differently, nor expect any less from her than any other student.
We are still learning and dealing with her diagnosis.There isn’t a lot of information with her specific gene change, but everyday we learn and get through.

Zoek andere pagina's die hetzelfde onderwerp delen als deze pagina RAD211 Wat is de oorzaak van het Cornelia de Lange Syndroom?
Baylee’s mom, Cheryl
Baylee’s mom, Cheryl

We are still learning and dealing with her diagnosis.There isn’t a lot of information with her specific gene change, but everyday we learn and get through.

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Laatst gewijzigd door Gerritjan Koekkoek op 2021/04/08 13:47
Gemaakt door Gerritjan Koekkoek op 2015/11/06 17:07

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