June 4, 2015

Back at NIH

Bertrand and Winston have been hanging out at NIH for year 2 of the CDG protocol for NGLY1 this week. 


Here's a quick pic to show the two brothers in action. 

2015 has been a non-stop collection of sprints for the entire Might family. 

We're hoping things will even out sometime this summer!


April 20, 2015

Boston for Bertrand

Bertrand's runner, Pam (#28444) and her husband yesterday.

Today, Pamela Lynch (Bib #28444) is running the Boston Marathon for our sweet Bertrand.

In his name, she is raising funds for the NIH's Undiagnosed Diseases Network (UDN).

You can make a tax deductible donation through NORD to support the UDN and give undiagnosed families answers and hope HERE.

Pam is a regional manager for Genzyme, an amazing wife, mother to 2 kids, athlete, and an advocate for rare disease diagnosis, research and treatment.

Bertrand was supposed to be cheering her on today at one of the checkpoints in Boston.

Instead we will be FaceTime-ing with her from home as Bertrand's cold progressed to pneumonia, and we were unable to make our Friday flight.

(I'll update on this later.  He is feeling much better thanks to antibiotics but not 100%.)

We are honored to have her and the Running 4 Rare Team championing Bertrand, NGLY1 and the rare disease community.

As we well know, a diagnosis is the first step toward understanding, treatment and a cure.

The groundbreaking work the NIH's UDN is doing deserves all the support we can muster.

All families deserve answers.  They deserve hope.

Thank you, Pam!  Your Running 4 Rare is making a difference!  We love you!

April 7, 2015

Dubby's 9th Month


Just a quick post to share our adorable 9 month-old Danger Dubby.
His favorite song is "If you're happy and you know it." He requests it by clapping his hands.
Even sick (like he was in these photos), he is always happy!
He waves, blows kisses, and can point to body parts (eyes, nose, mouth, etc).
He is almost walking.  Eep!  He is fast becoming a toddler. *sniff sniff*
Everyone who meets him, loves him.  His parents most of all.  :)









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All photos by Staci Cummings of Sweet Envy Photography.

February 9, 2015

HB 94: Utah "Right To Try" Act

HB 94 is Utah's "Right to Try" Act.  Right to Try allows terminally ill patients access to investigational medications and devices that have completed FDA phase one safety testing.

We are extremely grateful to Jonathan Johnson, Rep. Gage Froerer, the Goldwater Institute, and fellow rare advocates Jen and Stan Summers for helping to get this important piece of legislation to the floor.  

Many thanks to Jen (Talan's mom) for the photos!

February 5, 2015

Obama

I fell off the blog post wagon because THIS happened last week.

Kids are sick, Matt is out-of-town, but life is busy and beautiful.

PS-If you live in Utah, you better register for Rare Disease Day!

January 24, 2015

Sundance Stephanie

We were lucky enough to meet Stephanie D Fischer this week for Sundance!

We call her the "kid whisperer" because she charmed all 3 of the kiddos--the adults too. :)

Next time, Steph, you should just stay with us!

State of the Dubby Update:
Baby WJ turned 7 months on Monday. He can finally sign "more" and "milk".

January 16, 2015

Winston's 6th Month



Oh, sweet Winston.  Darling "Dubby".  My Little Prince.
I can't believe it's been over half a year since you entered our lives.
You are a joy in every dimension!


Strangers call you the "perfect Gerber baby"--and you really are.
Even teething (you have two!) or fighting a small cold, you are always content and smiling.
And you are always, ALWAYS on the move.


Last month you started crawling.  
This month you started climbing stairs and cruising.
You are feeding yourself with a *gasp* pincer grasp!  
(Sweet potato puffs are your favorite.)




What will next month bring?  Every day you change so much!
Your father and I marvel at everything you do and the little person you are.


We take nothing for granted.  
You're a gift.


Eventually, Victoria will come around to realizing that too.  ;)


While I wish I had taken more photos (like I did with Bertrand and even Victoria), I don't regret spending that time snuggling you instead.  :)

Mama loves you more than there are stars in the sky, little angel.
xoxo