February 29, 2012

Rare Disease Day 2012

AMAZING! Moving. Humbling. Unforgettable.
Today was a day that I will hold in my heart forever.

Bertrand could tell he was being spoiled. :)

Rare Disease Day was embraced by everyone at Ensign Elementary, Bertrand's school! Participation was optional, but you would've never known that based from the outpouring of support.

Bertrand got extra love from Miss Heather.

  • The hallways were flooded with kids wearing JEANS for GENES.
  • Over 400 denim ribbons courtesy of the RARE Project were distributed by 9am.
  • At noon the student body held up their right hands in recognition of rare disease.
  • Optional donations were collected for the genome sequencing facility at the Univ. of Utah.
  • A TV news station (KSL5) filmed and newspaper reporter interviewed us.
  • Crafts were made for rare disease patients being seen at the medical genetics department.
And the most awesome of all: a giant denim chain of links, made by each Ensign student inscribed with messages of love and hope for Bertrand, was presented to him by the principal and the student body. (Yes, I bawled on my way to the car.) It is the most perfect and wonderful craft ever!

There are about 350 links. Every message is different, but some include: "I love you!", "I will pray for you every night", "My grandpa has a rare disease", "We can play together", and "Smile!" I think I will read a few links everyday, or maybe save them for when times get tough.

Victoria also spread rare disease awareness.

We are so fortunate to live in a community that values our beautiful boy for the wonderful person he is and committed to make the world a better place for others!

We love you, Ensign Elementary!
Go Eagles!


  1. I am so glad you felt so much support. How could anyone NOT love Bertrand?! It sounds like the school staff put a lot of extra thought and effort into making this day wonderful for everyone. I'm sure it was memorable not just for your family but for all the staff and other children.

    On a totally different note, Bertrand is looking slim and trim these days. And Victoria is growing into an even more lovely little girl. I hope you will be around in July so I can come see you all when we are in Utah.

  2. Cristina and Matt,

    Bertrand is giving such a lovely smile! All the best to him.



  3. Cristina, WOW! This is the first video I have seen of Bertrand in a long time and the difference is incredible. He is so interested in the toys, he focuses so well on them, and he is so active in exploring them! Wow wow wow!!! Makes my day.

  4. That's amazing -- Bertrand has grown up so much. I really liked watching the news clip (and hey, I know that classroom! Nice to see it again too :))

  5. Barbara over at TheExtras turned me onto you. We live with some of the same challenges in Colorado. I am looking forward to getting to know your familky.

  6. Thank you, all! I am already planning for Rare Disease Day next year! Watch out, SLC! ;)

    Amanda - I think I already follow your blog! I look forward to communicating with you more. :)