Walking With Giants Foundation
Supporting Individuals and Families Affected By Microcephalic Primordial Dwarfism

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Avery3 August 2010

Avery was born at 38 weeks in February 2009. She weighed 4lbs and had a head circumference of 24cm. The doctors knew before her birth that she was small and had severe microcephaly. Her head was so small they weren't even sure she had a fully formed brain.

Some doctors didn't expect her to breathe on her own and they were prepared to insert a feeding tube but she proved them wrong on both counts and needed no help breathing and took to the bottle right away. Though she gained very little, she was released from the hospital at 3 weeks old. We were basically told we were bringing her home but not to expect anything as she didn't have enough of a brain to develop and all of her systems would slowly shut down until she was in a vegetative state.

Avery has done nothing but prove everyone wrong. Though she gained weight and grew very slowly, she followed her own curve and developed at a slow but steady pace. At 6 weeks she was over 6lbs, 49cm tall and her head circumference was 30cm. She's had many doctor visits and has been in physio and occupational therapy since she was 3 months old. She's been holding her head up since she was born and has been reaching and grabbing at toys since 6 months old. She also started to eat strained baby food at 6 months old and though she hasn't gone on to more solid foods yet, enjoys a variety of tastes.

Her first year of life was filled with many doctor visits and tests looking for a medical diagnosis. At one month, it was discovered that she has an allergy to milk and at 10 months we learned she has asthma. She's had EEGs, CAT scans, an MRI, an echocardiogram (she's had a heart murmur since birth), visits with an physio therapist and occupational therapist, lots of blood tests, and many neurology specialist appointments looking to see if her small head size was due to a fused skull. Thankfully we have discovered her small head size is not due to a fused skull so no brain surgery is required at the moment but it also means her head probably won't grow much bigger than it is today. At 9 months old she was diagnosed with Seckel Syndrome, a subtype of Primordial Dwarfism. At 20 months a hearing test showed Avery has some hearing loss but the extent of it is still unknown. Avery has chronic ear infections and tubes were inserted in January to hopefully fix this issue.

At 15 months old Avery was able to sit independently. She's still wobbly but likes to be up and play with toys. She babbles a lot, claps her hands and gives great kisses. She now weighs 14 lbs and is 72 cm tall. She doesn't have the regular baby proportions, she has a short torso but long legs and arms so her clothes are hard to fit. In order to have her pants long enough we need to take in the waist. Her head circumference has been 32 cm since she was 4 months old, which means she has a small mouth and now that she has 12 teeth, they are crowded and growing behind one another. Her favorite things to do are play with any musical toys and playing with her older brothers and sisters. Avery will be 2 next month isn't able to walk but she has figured a way to get around, her version of crawling.

In August 2010 we travelled to Liverpool for the WWG's annual convention where we met other PD children and their families.

We spent a week connecting and sharing stories and finally feeling understood. The time we get to spend together allows our children to get to know other kids like them and know they are not alone. Without the WWG's help, spending this time together wouldn't be possible.

Joanne and Gary - Avery's Parents (Canada)
January 2011

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