top of page

Joannah (Jo) is 2 year old and was diagnosed with CdLS at 6 months. Her gene mutation that caused CdLS is the NIPBL gene. 

Joannah has some limb differences, three fingers on her right hand and six on her left. She also has the very obvious facial features of CdLS. Joannah has myopia and wears glasses, and has severe to profound hearing loss in both ears. Jo takes all her liquids via a g-tube. 

Some things we love about our little Jo: 

We love seeing Jo smile
We love when she embraces us 
We love when she hums her little songs 
We love how curious she is 
She loves everyone and goes with everyone 
I love how she looks like a little doll (we totally play dress up) 
We love how in her own little non-verbal way she still tries to communicate with us 

Somethings our little Jo loves: 

Jo loves to play with phones and anything electronic
Jo loves snuggling her Barney to sleep 
Jo loves to play with other kids (when kids are around shes the happiest and tries to copy them) 
Jo loves to be around her dog Mia (but Mia sometimes doesn’t feel the same hahaha) 
Jo loves watching PePpa Pig
Jos favourite snack is her ranch chips 
Jo loves to FaceTime 
Jo loves dancing/clapping 

She’s our gift sent from heaven.

bottom of page