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Maryland, USA

Rayhanna was diagnosed in April 2018 at 8 years old with 10p12.1 deletion or WAC gene related disorder. As soon as I got home that day I began my own research and found DESSH is her actual diagnosis. 

Now let’s start at the beginning.  Rayhanna was born a happy healthy little girl. She was such a great baby! Everything seemed perfect and normal with our little princess until around 6 months when she was still having trouble sitting up. She also never seemed interested in playing with toys. Finally, at 9 months she started to crawl and move around. She didn’t babble that much and as she approached 1 year she didn’t seem like she wanted to say anything. She finally took her first steps at 18 months. It was still quite some time before we were able to hear her voice.  Her pediatrician never seemed concerned. Never made a referral. Always just said she is delayed but I shouldn’t be too concerned.

Rayhanna started preschool at age 3.  The teacher pointed out that Rayhanna was behind her peers. Finally at 3 ½ years old she began speaking. What a relief!! And she spoke so well! I started to think- wow! She was just delayed but she is going to catch up so quickly! Wishful thinking.

The following year she was enrolled in public school pre-k program. The school team noticed her delays and said she is still behind her peers. We had multiple team meetings but they would not implement an Individualized Education Program (IEP) as she always tested in the average range.  

When Rayhanna was 6 years old she had her first seizure. It was a grand mal seizure and it really terrified me. I just kept thinking what’s next for my little girl? We began all the testing- CT, MRI, EEG, blood panels, etc. Inconclusive results. No answers. She had seizures daily until she was diagnosed with epilepsy and started on medication. Finally, her seizures were reduced significantly after many trial and error medication changes AND we had a diagnosis and referral to a developmental pediatrician! This is what we needed for an IEP for her to receive help at school.

Shortly after, Rayhanna began acting out and overdramatizing. She started laughing inappropriately at situations at home and school. She would awkwardly stare at people at playgroups, school, and other outings. So many different changes to her personality that an epilepsy diagnosis didn’t help explain. I kept searching for answers though. It didn’t make sense.

The following year we switched neurologists and started going to Kennedy Krieger Institute in Baltimore.  They started all the tests again. Finally, her new doctor ordered genetic testing! And that’s how she got her diagnosis.  Getting the news of her having such a rare disorder that has no cure or much information to even read about was disheartening but somehow a relief too.  We don’t know what the future holds but at least we know what journey we’re on.

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