Elle – 18 years old

• First smile – 6 weeks
• Sitting on her own – 5 months
• Rolling over – 5 months
• Can say mama, dada, baba (bye-bye), nyn-nyn (nite-nite) and Avo, plus lots of babbling – 8 months
• Crawls (begins with commando crawl and then progresses to hands and knees) – 9 months
• Pulling self up to stand in crib – 9 months
• Walking on her own with push toy – 11 months
• Can clearly say: bye-bye, duck, bike, dog, bath, bum, pool, milk and continues to use the words from 8 months – 11 months
• Uses anything she can to cruise – 12 months
• Plays peek-a-boo, climbs up the stairs on hands and knees, can clap her hands, give five, wave bye, can point to her teeth, hair, and belly – 12 months
• Takes a few steps on her own – 13 months
• Walking independently -14 ½ months

Around 17 months – we notice that Elle isn’t using her words as much nor as clearly.  We ask her daycare teachers who indicate that two new children started and felt that sometime kids regress a little when younger children join the room (we now know it was likely the beginning of the regression associated with Rett Syndrome).

• First physio appointment – 20 months
• First speech therapy appointment – 23 months
• First occupation therapy appointment – 30 months

Diagnosed Global Developmental Delay – April 19, 2010

First known seizure – March 28, 2012

Diagnosed Rett Syndrome – C to T variant at nucleotide 397 in exon 4 of the MECP2 gene – October 26, 2012

Diagnosis with Scoliosis – August 2018

Spinal Fusion Surgery – December 23, 2019

Although there are many things that Elle struggles with, she:

• is a happy, loving, affectionate, little girl.
• loves to read, going to church, spending time with her family especially her younger sister.
• is currently in Grade 12.
• loves school
• loves to swim and learning to skate.
• can feed herself (although always a little messy).
• is fully toilet trained during the day.
• love watching live hockey and soccer games.
• is her sister’s #1 cheerleader!