Top 10 Interesting Situations, Advice & Funny Comments said to us as Parents Managing Hunter Syndrome

During our journey with diagnosis of MPS II, Hunter Syndrome, and dealing with the daily demands of this disease, we interact with a lot of doctors, therapists, nurses, billing departments, etc.  We've had some really interesting conversations!!

Here are our favorite Top 10 best, interesting and funniest situations and statements made to us of all time.

Coming in at Number 10...

10.) "Don't worry.  Just because we're looking at an MRI image (brain image) with enlarged perivascular spaces, doesn't mean your child has to go to state school.  I know someone who went to Harvard who has enlarged perivascular spaces, and he's really smart."  (whew, that relieves all of our worry, thanks!!  Note to self to contribute to our college savings fund.)

9.) "We're not calling your kids ugly or anything.  They just have coarse facial features, and a bossy (bossed) forehead.  You'll need to get used to us saying that..."  (um, OK.  Our children's facial features are mildly impacted by Hunter Syndrome but there are features that make Hunter Syndrome identifiable such as a broad nose, shorten neck, thickened tongue and lips, etc. Now we just ignore this when anyone says this to us.)

8.) "Are you available for hire?  We have residents here who can't fill a form out like this...wow, you're amazing."  (Learning medical terminology is part of our job as parents!)

7.) "I wasn't sure if I should tell you this or not, but you probably won't be able to potty train your son.  I wanted to see how you would do it...let's just give it a go and see what happens."

6.) "You will need to go ahead and pay this bill.  It's $120,000.  Would you like to pay with cash or with a credit card?"

5.) "Do not Google this, and here's my home number and cell phone number if you have questions."  (We Google'd Hunter Syndrome in the elevator.)

4.) "I know what Autism Speaks is because of Jenny McCarthy."  Response - "ugh that's nice but she should stick to MTV"

3.) Dr. finishes exam, says nothing, leaves the room.  We sit, waiting, waiting, crickets are chirping, more chirping.  Is it over?  Hello, is anyone out there?  Has the exam ended?  Has the staff gone home?  HELLO...

2.) "It's clear that you are well aware that nerds will run the world, and you know that if your kids are not nerds they will work for nerds.  Nerds who wear Merrells none the less.  Let's geek out together, I can tell you like to geek out.  You are my BFF."

1.) "You're his Mother!!  You have to have hope!!"  (Love, love, love this one!!!)


Whether you're a new parent or battling a rare disease, I am sure you can all relate to getting lots advice about your children.  We've had the greatest support from many professionals but we do like to look back and laugh at some things along the way.

The Cherrstroms