Sunday, September 15, 2013

The X-Boys Meet...

Since learning earlier this year about Max's new disease, CblX, we have been looking forward to the day we would meet another boy like him.  Through the years of meeting and visiting with children with various types of organic acidemias, we have never met anyone quite like Max.

Today, that changed.  We had our Colorado family organic acidemia picnic scheduled for today. Unfortunately, we were rained out of having it at the park we had reserved.  Thursday we scrambled around to find a new location at such late notice.  We called around to a few people and were able to have it at Children's Hospital, where all the kids are seen in the Inherited Metabolic Disease clinic.

The washed out roads from our wild flooding across the state kept a few of our families away, which was really disappointing.  And colds and tummy bugs kept a few others away.  Despite missing part of our group, we had a great turnout and a really good afternoon of visiting with families with all types of organic acidemias.


While I was excited to see all the families I visit with regularly on Facebook, and email, and to meet new families,  I was especially excited to meet 'Subject 2'...aka Max's brother from another mother...Jeriah. He is the other known case of Cobalamin X.  They flew in from out of town to be at our picnic.  At first sight, we could already see how similar they were!


Max looked like a giant next to Jeriah!  But, they both had their spindly legs, and always, always on the move!

They hold themselves the same way.


They spent a lot of time on their respective yellow blankets!

And we sat in awe of how similar they look.  Down to their toes!

They both kick so much, we decided head to head was probably the best position to try to get them photographed closely together.  That was like herding cats.  Jeriah would rock over to Max, Max was swatting for a hug...and they were both saying "hello" with their feet!

Jeriah would try to get up.

Max would try to get up.

I loved this photo Abbey captured.  Here I have my hand protecting Jeriah's head from the floor, and Stacey is holding Max's head.  We knew and could predict the way these children would move.

This photo captures our own little tribe of X-Boys, and their mommas.

We visited for a few hours, along with all the other families who came.  I love getting to visit with other families of children who share the same challenges we do.  It's helpful not only for the parents, but also for the siblings, to see they aren't the only ones in the world with a different sibling.  Just look at these proud big sisters!

Max was feeling pretty proud of himself too.

While we were taking photos, I stopped to take a video of them doing their little dance by each other. It's really something incredible to see.

Thank you to Jeriah's family for reaching out to us, and traveling to meet us.  Thank you NIH for getting us in touch.  Thank you doctors from CU, NIH, McGill, and University of Z├╝rich for their brilliant minds.  You found two boys in the world who were made from the same stuff.  We hope we can find the other 12 boys now!  


betsy said...

Wow, that was amazing - Thank you for sharing this, I can feel the energy!

Elizabeth said...

Wow. That is so amazing -- I can only imagine how your two families must feel, finding one another. What's really interesting to me as well is how the physical similarities manifest -- and how similar they are, even to the Rett Syndrome girls' clinical characteristics.

Junior said...

what an amazing day, such a great post.