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Overcoming Movement Disorder

Loving, learning, & parenting a child with a rare genetic disorder.

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About Bertrand

Born in December 2007, Bertrand is a charming, serious, young man. He lives in Salt Lake City, UT and has global developmental delays (0-6 months-old), leukodystrophy, intractable multifocal epilepsy, peripheral neuropathy, liver fibrosis, gastroesophageal reflux disease, osteopenia, autism, cortical visual impairment, movement disorder and alacrima (lack of tears).

He is the first documented case of N-glycanase disorder.

You can read more about his early history HERE.

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Blog Archive

▼ 2012 (90)
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- ▼ January (23)

► 2011 (135)
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► 2010 (142)
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► 2009 (253)
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Bertrand's Groupies

Bertrand's Friends

Little Miss Hannah - Our Fight against Gaucher's disease

Epilepsy Warriors

Inspire health and wellness support groups

Epilepsy Foundation

Epilepsy Hope

"When our child began seizing, we felt like our world was ending. But the journey of a lifetime was beginning."

This is the inspiring story of Bertrand's friend, little John.

Share This Blog

Support Bertrand: Rare Diseases Aren't So Rare.

Stander Challenge

Since April - 1-2 hrs. daily!
04/03/11 - 53 min.
03/29/11 - 0 min.
03/28/11 - 23 min.
03/27/11 - 105 min.
03/26/11 - 0 min.
03/25/11 - 36 min.

Weight Challenge

01/03/12 - 34lbs. 6oz.
05/16/11 - 36lbs. 10oz.
04/11/11 - 37lbs. 10oz.
03/14/11 - 38lbs. 10oz.
03/07/11 - 39lbs. 10oz.

Bertrand's Calendar

Cord Blood Banking

Our son underwent an autologus stemcell infusion in August 2010. This is why we bank their cord blood.

Bertrand's Fund

Bertrand supports the Human Genetics Department at the University of Utah, a US 501 (c)(3) Non Profit Organization. Bertrand's Fund is for a rapid DNA sequencing center, where full DNA sequencing will be available to patients like Bertrand--helping to discover the causes and cures for rare diseases and disorders

Family Photographer

Staci takes our family photos. We love her!

Blog Archive2

► 2009 (253)
- January (14)
- February (9)
- March (46)
- April (34)
- May (23)
- June (18)
- July (12)
- August (11)
- September (17)
- October (19)
- November (25)
- December (25)

► 2010 (142)
- January (15)
- February (16)
- March (21)
- April (16)
- May (15)
- June (13)
- July (7)
- August (12)
- September (3)
- October (3)
- November (7)
- December (14)

► 2011 (135)
- January (19)
- February (12)
- March (17)
- April (13)
- May (6)
- June (3)
- July (4)
- August (5)
- September (13)
- October (16)
- November (17)
- December (10)

▼ 2012 (90)
- January (23)
- February (14)
- March (21)
- April (14)
- May (18)

"The good life is one inspired by love and guided by knowledge." - Bertrand Russell