Last Friday, I had the pleasure of photographing my friend Leah's middle child, Gracie. Leah is one of my friends who shares a passion for photography and so I knew that giving her this special session would be so meaningful to her and that she'd have a deep appreciation for these images.
Leah applied through
Helping Hearts for this session and I was so happy to see her application come into my inbox. Even though the weather tried to spoil our plans, we moved quickly and actually finished the session at my studio.
Below is an excerpt from Leah's application. It explains Gracie's story in her mom's own words.
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Gracie was born in 2002. Her older brother was almost 3. In fact I was due on his 3rd birthday. Gracie came 10 days early, born March 26th at a healthy weight of 8 lbs, 11.5 ounces. She was the biggest of all my babies. My pregnancy with her was healthy, and her delivery was normal - about 6 1/2 hours start to finish.
When she was born she had trouble latching for feeding, and she had funny shaped little heels - but other than that, there wasn't really any indication of concern. Her infancy was great. She was an extremely passive, content baby (which I now know can sometimes be a red flag oddly enough). I had little "niggly's" I call them. Little feelings sometimes that things weren't the same as Brody's infancy or maybe not quite "right". She seemed to startle too easy, and she hated the swing, she didn't like cuddling in a cradle position. She never was able to nurse. She just never seemed to have the strength to latch. My breasts were victims of countless assaults by lactation consultants & public health nurses. All in the attempt to get this poor starving baby to latch.
She had a much different look than Brody too. Nothing anyone could ever put their finger on. Just different. At 14 months she wasn't furniture walking (holding on to couches, etc) so we met with the pediatrician who assessed her for about 45 minutes and then suggested I sit down. I remember that day like it was 5 second ago. He listed off several things of concern, diagnosed her with
hypotonia also known as low muscle tone (which, thank you very much explained why the poor sweetie couldn't latch!) and then said "I think we should begin genetic investigations". Seven little words that took my breath away. Huh? She's just not walking, and she doesn't really make eye contact, and oh, she screams in terror when I vacuum. Oh, ok.
Anyway - fast forward 3 years. She had great support and intervention at our
Child Development Center. The geneticists tested her for countless syndromes. I spend hundreds of hours scouring the internet for all her symptoms. All the tests would come back negative. We'd cheer and then go back to square one. Desperate for answers, aching for the crystal ball that would tell me what we could expect, and how best we could help her.
When Gracie was three we were asked to be part of clinical research trial - looking at Chromosomes of children with developmental delays with otherwise no known cause. Gracie and Neil and I all gave blood samples and several month later we got our results. Gracie has a microscopic amount of material deleted from her 14th Chromosome. Genes are missing from a band called 14q11.2. So that was it. That was our diagnosis. There is one other boy in Vancouver with this same area deleted. And one child in England.
At 9, Gracie is doing very well. She's happy and healthy. I help people understand her disability by explaining that she has a chromosome deletion and that she has global developmental delays. She struggles socially, has anxiety and weird quirky little phobias. She has fine motor delays, gross motor delays and needs support in her school to focus on her academic work. BUT - in the grand scheme of things she's very healthy, she's progressing and is a very content girl. She has a great support team with a Physiotherapist & Speech & Language pathologist. She does therapeutic horseback, yoga therapy and has an Educational Assistant in her Grade 3 class to help her achieve her fullest potential. I am extremely grateful to have access to all these services for her.
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So without further ado... this is the one and only Gracie.
Be sure to leave 10 comments below so this family can receive a special prize!!
