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A new website “Genes in Life” was just launched and answers
the question “How do my genes affect my life?”
There’s great information on genetic testing and what it means for
families.
* * * * * *
As you may know from past posts, my daughter has multiple
disabilities. She was born with a rare
kidney disorder which we literally found out on day one, and even though
genetic testing was negative, we were told to mention to our siblings when they
started their families.
Fast forward to age 7 when she was diagnosed with autism,
which was much rarer then than it is now.
She had been homebound as medically fragile but once in a school
environment had behavioral issues.
My
gut told me something else was going on which was immediately confirmed by
Children’s Hospital.
She was tested for
Fragile X, which was also negative, but I also thought this may be
genetic.
Due to already having both
kidney disease and now autism, that made our decision not to have any more
children final.
Fast forward again to the present.
Stephanie developed other conditions through the years like spina
bifida/scoliosis, vision/hearing/dental issues, dermatological
biopsies/surgeries, seizures, etc. She
has been hospitalized a dozen times over the past two years post transplant
with unrelated complications. The Human
Genome Project has opened new doors in genetics. Stephanie did a blood test called a SNP array
(single nucleotide polymorphism) and so did we.
She was found to have a partial chromosome 21 deletion. Chromosomal changes can include deletions,
duplications, or inversions. I found
lots of good resources and felt like all of her symptoms were finally explained.

As I recently wrote in Exceptional Parent magazine, “
If families know will ahead of time what to expect, they
can take better care of their children, and the children will reach their
personal best potential.” If you’d like
to read our complete journey, see “What Genetic Testing Means for Families: A
Parent’s Story” in last month’s issue of EP at www.eparent.com
(preview is free).
Resources
Genetics:
Rare Conditions:
Family & Kid Friendly info:
Remain Hopeful,
Lauren
Lauren
Agoratus is a parent/advocate who serves as the NJ Coordinator for Family
Voices, a national network that works to “keep families at the center of children’s healthcare” at www.familyvoices.org or FB www.facebook.com/pages/Family-Voices-Inc-National/137783182902269. She also serves as NJ representative
supporting caregivers across the lifespan for the Caregiver Action Network
(formerly National Family Caregivers Association) in a volunteer capacity at http://caregiveraction.org/ or FB www.facebook.com/CaregiverActionNetwork.
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