You may remember the Coleman family from last fall when I did their family photos. At six weeks old this little girls brother, Jonas was diagnosed with a genetic disorder called SMA (spinal muscular atrophy). SMA Type I is a terminal genetic disease that results in loss of nerves in the spinal cord and weakness of the muscles connected with those nerves. He passed away just over a month after we did their family photos, in November. Little sister Maggie was also born with the disease. She is 7 months old and an absolute beauty. You just want to take her home with you. The love that her parents have for her is just overwhelming.
We did their photo shoot in their home, it was so fun, I truly loved every minute. Because it’s miraculous for kids with SMA to live to age 5 you can just see how much they cherish every second with her. Photographing families like theirs makes me rededicate myself to my own children. To put them first, to enjoy and savor every minute I have with them.
You’ll see a Winnie the Pooh Bear is some of these photos, he was Jonas’s favorite stuffed animal….
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I’m always willing to do free sessions for families with terminally ill children. If you or someone you know would like this service, please visit my utah photography website and contact me there. 🙂
It wouldn’t be right to leave Jonas out…. here are some from our session just 6 months ago.
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