Overcoming Movement Disorder
NGLY1
A sobering moment of acceptance
Part of what made Cristina so attractive to me years ago was her intellectual drive. She's always held academics in the highest regard because of her father, a distinguished professor in medicine, and I think that kind of respect is why she ultimately fell for me. ;)
Long before Bertrand was born, we imagined how smart our children would be, or at least how smart we could help them to be. I used to joke that I would be a very liberal parent, in that I didn't care in which field Bertrand earned his Ph.D.
So eager to see him one day reach his intellectual potential, we opened two college savings accounts (a 529 and an ESA) for him less than a month after he was born, and we've been making the maximum monthly contributions ever since.
Naturally, we'll never give up on Bertrand, and we'll always push him to his limits (and beyond), but it's become clear that the physical limitations to his intelligence are severe. To say the least, we've come to accept that he's never going to attend college, even if he survives long enough.
Today, we made the difficult decision to close his 529 account, and to redirect that money to his therapy and medical expenses instead. We're leaving his ESA open, since that isn't necessarily tied to him; it could still be used for siblings or others.
All that said, if Bertrand is half the stubborn Casanova his mother is, he will take delight in one day proving our decision to close the 529 account spectacularly wrong. (And, I hope he does!)
Carrie May 15, 2009 at 3:28 PM
Matt, I'm having that same kind of day. After Hannah's visit today and learning we have more symptoms coming to the surface, I've spent the day dealing with a reality check. It sucks.
Our kids are stronger, stronger than the doctors ever expected. But reality is reality, and we as parents have to deal with it, I guess.
He wil prove of all us wrong!!! I know he will.
My love for all of you,
Hi! Welcome to our blog.
NGLY1.org
N-glycanase (NGLY1) deficiency awareness, diagnosis, research, and support.
Medical Journey
Bertrand is the first case of N-glycanase deficiency in medical literature.
It took 4 years and a team of remarkable researchers to receive this diagnosis.
A synopsis of Bertrand's medical journey (on his dad's blog).
The article from The Journal of Medical Genetics is open access. (Bertrand and parents are "Trio 2" in the study.)
June 21, 2014 One of a Kind
What do you do if your child has a condition new to science?
November 25, 2012 Saving Buddy Utah couple races to help son with unique genetic disorder.
KSL 5 TV
December 24, 2012 Christmas Hope Utah family hopes for a Christmas Miracle: a cure for their son.
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 developmental), brain damage, intractable multifocal epilepsy, peripheral neuropathy, liver damage, osteopenia, cortical visual impairment, movement disorder, and alacrima (lack of tears) resulting in corneal erosion.
The Bertrand Might Research Fund has been established at Sanford Burnham Medical Research Institute, a 501(c)3 charitable organization. Your donation will help Dr. Hudson Freeze's lab begin to unravel the mystery of N-Glycanase deficiency, and hopefully find a treatment in the near future. DONATE HERE
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Now I Can is a nonprofit 501(c)(3) charitable organization dedicated to helping disabled children reach their greatest potential through intensive physical therapy. Bertrand has benefited greatly from sessions there: Oct 2011, Dec 2011, May 2012, Aug 2012. His next session will be in July 2013.
HopeKids provides ongoing events & activities and a powerful, unique support community for families who have a child with cancer or some other life-threatening medical condition.
Angel Hands
The Angel Hands Foundation help Utah families deal with the everyday struggles facing families with rare diseases
Bertrand Thomas Might
Our son underwent an autologus stemcell infusion in August 2010. This is why we bank our kids' cord blood.
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