In case you missed it, Dr. Hsien-Hsien Lei of Genetics and Health , named Dream Mom, blog of the week. Her blog is focused on helping you take advantage of the genomic revolution.
In the post, “About Dear Son”, I describe Dear Son’s diagnosis, and more importantly, the Aristaless gene, or ARX for short, that was responsible for his disabilities. Dear Son, was the first person in the world, to be diagnosed with one of the three patterns of the gene. I talk about how it was diagnosed, and include links to the geneticist, testing labs, and the original paper that was published in published in the November, 2002 issue of Nature Genetics. I hope this post raises the awareness for medical professionals, particularly pediatricians and neonatalogists, since they are at the front end of process, about the Aristaless gene or ARX as it is known. My post also defines the types of children, that should be tested for the gene.
I can’t begin to express my gratitude for this. I wrote the post, “About Dear Son” to illustrate how important it is to the parents, to finally know what caused their child’s disabilities. We live in a world where people are quick to take credit for all of the brilliant things that their child does and when a child is born with severe disabilities, you can’t help but take it personally, even if you did nothing to contribute to them. As a parent, your life is forever changed by this child and yet, your love for them knows no boundaries. I know first hand what a huge burden was lifted off my shoulders, when I found out what caused my son’s disabilities, and also when I found out it occurred at random, which is not always the case. I hope you will share this link with whomever you think would benefit.
Thank you, Dr. Hsien Lei, for all that you do.
A midwest mom shares and reflects on the love for her Dear Son Matthew and the challenges of everyday life with a severely disabled young man. In addition, she shares her love for decorating, organizing and keeping a clean home. ©2006-2024. All Rights Reserved.
Subscribe to:
Post Comments (Atom)
Good Reads
Labels
Accessibility
(1)
Anniversary
(2)
Apartment Kitchen Makeover
(2)
Best Patient Blog Nominee-2006
(1)
Best Toys and Gifts for Special Needs Children
(4)
Blenderized Diet. Real Food
(6)
Blendtec
(5)
Blizzard
(1)
Blogburst
(2)
Chalkboard
(1)
Charles Tillman Cornerstone Foundation
(1)
Christmas
(3)
Christmas Gift Ideas for the Disabled
(2)
Coconut Oil
(12)
Corporate Kitchen
(1)
Dear Son
(2)
Dear Son Medical Update
(37)
Dear Son on CNN
(1)
Dear Son's Diagnosis
(2)
Dental Visit
(2)
Dream Kitchen
(1)
Dream Mom Spine Surgery
(3)
Dream Organizers
(11)
Drug Shortages
(1)
Father's Day
(1)
Food
(2)
Gallbladder Infection
(1)
Graduation
(1)
Green Smoothies
(1)
Halloween
(14)
Happy Birthday
(3)
High School Graduation
(1)
Home Staging
(12)
Hospital Bed
(5)
How To Raise a Happy/Healthy Child
(4)
IEP
(1)
Klonopin
(1)
Lack of Bathrooms for the Disabled
(1)
Make a Wish
(22)
Make a Wish Trip Journal
(7)
May 2009 ICU Hospitalization
(9)
Medical
(2)
Mom Nursing Home Injury
(1)
MRSA Pneumonia
(5)
November 2009 Hospitalization
(22)
Organizing
(10)
Playroom Makeover
(5)
Poetry Contest
(1)
Rehab Equipment Exchange
(1)
School
(1)
Scopolamine
(1)
Seizures
(1)
Someone Special
(1)
Studio Apartment
(6)
Suction Machine
(1)
Swine Flu
(19)
Tablescapes
(16)
TendHer Heart Luncheon
(1)
Thanksgiving
(1)
The Ashley Treatment
(5)
The Saga of Baby Toby-Fiction
(9)
You Tube Link
(2)
Blog Archive
-
▼
2006
(126)
-
▼
April
(22)
- High Deductible Medical Plan Review
- "Dream Mom" named Blog of the Week at Genetics and...
- Magazine Envy
- There’s No Place Like Home
- I’ll be home for Christmas…
- Word Cloud
- About Dear Son
- Once Is Not Enough
- Spring Hopes Eternal
- Grand Rounds is up!
- Welcome oncRN!
- Fast Forward
- An Easter Egg Hunt, of Sorts
- If You Could Read My Mind
- Grand Rounds is up!
- Here For The Party!
- Match.com
- Christmas Blessings
- The Hole
- Grand Rounds is up!
- Spring Cleaning
- Don’t Hate Me Because I Am Beautiful
-
▼
April
(22)
1 comment:
I'm smiling for you, Dream. Great job!
Post a Comment