I have recently joined the team of photographers at Inspiration Through Art ( www.inspirationthroughart.org ) It is a non-profit organization that offers free photo sessions to children that are dealing with a difficult illness or disease. It not only increases awareness, but it’s an awesome way to bring hope and healing. It is so touching to read through the stories of all the little children that have been touched by this organization.
My first opportunity to bless a family through this organization was with the beautiful little Calla. She has been through more hardships in her first months of life than most will ever go through in their entire life. She truly is an amazing little girl with an amazing family. I am astounded at the strength and hope that they all exude. Please read through her story below. You might want to grab some kleenex first, this is a story that can easily make you cry!
Here is Calla’s story, written by her beautiful mother Linnea:
Calla was born small but apparently
healthy on June 7th, 2010. We were so thrilled to have a daughter! When I kept
seeing “white eye” (leukocoria) on photographs, I took her in to
check out her vision. After running the gauntlet of doctors, we were sat down
and told she is legally blind. She has no central vision whatsoever. It was
incredibly heartbreaking to know that my tiny 2-month old daughter would never
be able to drive or read or do so many of the things that are
“normal” in everyday life.
The very next day, the doctors ordered blood tests. A week later our world
changed forever when received the news that she had been born with ring chromosome
9. Ring 9 is an extremely rare genetic disorder: genetic material is lost from
both ends of the 9th chromosome which then join to form a ring. With only 120
documented cases she is literally one in a million.
No one knew anything about it and we were sent home with the only packet that
could be found with any information — a list of the medical issues 20 or so
individuals had faced. It was so frightening reading all the possibilities; her
condition could affect virtually everything or almost nothing. We had no idea
what was in store for our daughter! Suddenly her vision seemed a small matter
compared to this great looming unknown.
Over her first year of life we began systematic testing to search for any
medical complications that may have been caused by her chromosomes. Every
“normal” test was a huge sigh of relief. She has her fair share of
complications though. Slowly we learned that she has several more eye
conditions, reflux and other digestive difficulties, 2 different brain conditions
that may cause seizures and will certainly cause cognitive limitations, a small
hole in her heart that may have to be surgically repaired, muscle issues,
sensory defensiveness, short stature and microcephaly, in a nutshell. She is
developmentally delayed and at 15 months is functioning at a 6-9 month level.
Calla has had a G-tube placed due to chronic dehydration, failure to thrive,
and oral aversion, and has had 2 glaucoma surgeries on her left eye with
another fast approaching.
She’s the strongest, happiest little trooper I know. Despite all the
difficulties she’s endured, she has blown the doctors’ expectations out of the
water. She compensates for her vision in ways that shouldn’t even be possible,
she loves people and is very interactive, is sitting independently and babbling
and doing so much more than was originally thought possible! She loves to laugh
and play with her brother, snuggle with mommy and daddy and explore anything
and everything! She is so curious and so eager to learn!
Calla is my hero. She is an absolute miracle and we know that she will continue
to leave her doctors dumbfounded!