Tuesday, January 7, 2014

Close to Home

Recently, as I was checking in on our fellow families with kids suffering with ROHHAD (on one of our Facebook group pages) I saw my name tagged in a post.  It was a news post about a little girl being denied a gastric bypass surgery due to her age.

The reason her doctors felt she needed the surgery, though is because she had a tumor that damaged her hypothalamus (the part of the brain that controls hunger among other things).  The reason my name was tagged, though, was because the girl is from Cibolo - that's where we live.  I have not actually met anyone living in Cibolo who has a child with a damaged hypothalamus.  We thought Josh was the only one living here whose hypothalamus was not functioning correctly.

Here is a link to that original story I saw:  Obese, but starving: Girl, 12, denied weight-loss surgery

Since seeing the news story, though, I have been curious about this family and wondered about the similarities between that girl and my son.  I've since learned that the girl, her name is Alexis Shapiro, had the trouble with her tumor that brought on her obesity, when she was 9 years old.

Alexis Shapiro before/after hypothalamus damage

 Josh was about to turn 9 when he was diagnosed with ROHHAD.  His major symptoms all came on when he was 8 and a half.

Josh (age 8) in Feb 2005, days before going into respiratory failure
 and Josh as he has grown

Josh is now 17 and in 10th grade

Josh has been screened for tumors of neural crest origin many times over the years since his diagnosis - but has never had one discovered.  There are some in the ROHHAD community who have suggested perhaps some of our kids had tumors that damaged the brain in that area but then the tumor may have disappeared on its own????  Since none of us knows for sure what causes ROHHAD, we cannot be sure one way or another.  I just find it fascinating that another child so close to our home is dealing with something so similar to my son's disorder, which is extremely rare, and we have never crossed paths.

I did learn today, that Alexis has been approved (by her father's military insurance) for the gastric bypass surgery her doctors feel she needs.  Here is a link to that update on her story: Hope for Alexis: Insurance will pay for surgery

I shared her story with Josh this morning. I also emailed a reporter covering her story to offer my contact information to the family in case they would like to meet.  I think it helps to know someone else out there (especially so close by) is going through some of the same things you are dealing with.

Discovery Documentary - Life or Death : Battling to Breathe