Friday, November 28, 2014

Raising Rare Boys - Cure Hunter Syndrome

Support us and the National MPS Society with our CrowdRise fundraiser, if we get 10 donations of any value starting December 9th we could be one of the fundraisers/charities entered to win $10,000 USD. Thank you!

Tuesday, November 25, 2014

Surgery Day + GivingTuesday + 9 Days until Nick's 4th Birthday

Today is a big day for our family.

Nicholas (Nick) is 3 years old and has MPS II, Hunter Syndrome, a rare and devastating disease that only affects boys.  This disease causes him to be missing a key enzyme that facilitates the break down of waste cells, and without this enzyme he cannot purge these waste cells from his body.  This waste acts as a toxin, and builds up and gums up the works of vital organs, joints, including one's brain.

Nick's Surgery

Today, Nick is getting a port implanted to begin his participation in a clinical trial.  This is a tough day for us, as no one wants to see someone so small suffer or go through a surgery, and all surgeries carry risks.  For our family though, we're a rare disease family, we're accustom to facing these things head on with all the courage and bravery we can muster.

Please think of Nick today, and our family.  Help us hope for the best possible outcome.

Giving Tuesday

Interestingly, this day, a momentous day in history for us aligns with the start of #GivingTuesday (Giving Tuesday ends the 2nd of December). This is the start of a season of giving where we support our favorite causes, those that speak to us. Please consider picking us as your cause.  Alex is home today in Cleveland, as he does not qualify for this clinical trial.  We currently don't have any treatment options to affect his brain, and improve cognitive function.  We would love to win one of the monetary prizes CrowdRise offers (up to $250,000) for MPS II research!

Here is a link to our CrowdRise

Maybe consider giving $3, $4, $9, or $25 in honor of two things - Nick's upcoming birthday on December 3rd where he will turn 4 and today's date where he will become part of a clinical trial that our Hunter Syndrome community holds dearly to help save our children.

If not consider supporting some of the precious organizations that provide so much hope to our families, here are a few:

Ann & Robert H. Lurie Children's Hospital, specifically the Genetics Department (Dr. Burton)

Nationwide Children's Hospital, Center for Gene Therapy,

University Hospitals, Rainbow Babies & Children's Hospital:, specifically Rainbow Rehab (speech therapy, audiology)

Have a wonderful holiday season!

The Cherrstroms

Sunday, November 16, 2014


One weekend Nick said to me, "I have a best friend.".  I said, "Really, who is your best friend?".  He said the boy's name, and then he said, "He is my best friend."  I said, "How do you know he's your best friend?".  He said" because I like him and we play".  I said you have other friends too, and we listed them out.  He said, "he is my best friend." That's the kind of conversation that just warms your heart.

We mostly think about surviving Hunter Syndrome, but the quality of a person's life is just as important. Nick is living a good life with a best friend.  How endearing!  We don't think about this until we have to...each clinical trial visit there's a parent interview where I have to answer a lot of questions about our kids.  There's one question that is absolutely beginning to destroy me.

"Does Alex have any friends?" 

In my mind I think...

Jack has a best friend.  Nick has friends.  Does Alex have friends?  I don't think he does. How could anyone not have friends?  He has to have one...think, think.  He has his brothers but those are his brothers.  I think he stands by people but does that make them his friend?  People try to play with him but that's probably not a friend either.  I know children have been told to be his friend. I wonder if the other special needs children have friends in his current class.  I know Jack appreciates special needs kids more and that they need friends too. Maybe he has friends and I just don't know about  it.  She needs an answer to her question, answer her...the answer is "No".

Then this comes out: "Would you be friends with Alex?  He's big and intimidating.  He doesn't talk very much so there's not much engagement.   In typical classrooms, I see children run away from him or look scared. It's sad.  I cannot completely blame them because he used to bite or pinch but he doesn't do that anymore. I am hoping this improves.  I hope he gets a friend."

Alex is not only being robbed by Hunter Syndrome of his ability to communicate verbally, to have a healthy body, even his life, but he's being robbed of friendship...the gift of friendship and I know it is a gift. Alex is a child who has feelings, has deep love, and we receive a lot of his affectionate hugs.  I know he has the desire for a friend.

I recently told one of my friend's mom's, "that being friends with your daughter is a gift".  It's a treasure, a gift like no other gift. The gift of unconditional love that doesn't come from a sister or a brother but someone who chooses to be your friend.  I would never be described as really emotional (until I turned 40!!) but this will likely sound like a love letter about friendship.  Every breath I take, every tear that drops, the deepest of laughs, or the strength I exert is felt by my friends. I can tell.  I just know it.  I can't tell you how much comfort I take in friendship.  I feel some of my friends deep in my soul.  Some don't even live close to me but I feel their love and support, and I truly love them back.  I feel their pain, and their triumphs, I know when something really means something to them or is just a passing annoyance.  Friends make the simplest of gestures that mean the most; a hug, a look, a like, a post, a text, a RT, a call cleverly inserted into your calendar, a meet up, a quick phone call, or an IM to tell you they admire you and sometimes opening your wallet for something you know hurts your friend the most - their cause, their drive, the life of their child. Every gesture means something, something great because it's the one you personally picked.  I have read all of your words and they'll never, ever be deleted from my mind. I have heard your stories, sometimes of normalcy or not, sometimes hysterical, and sometimes not but your every word means a lot. You might not think I am talking about you but I am.

This is one of my wishes for Alex, the gift of friendship.

So there will be an event in the coming year, called "Friend Fest"because there needs to be some action here.  We'll have a big play date somewhere fun for all of us to be!  You'll bring a friend, and he'll bring a friend, and they'll bring a friend. There will be shirts that say "I'm Alex's Friend". Then I'll never have to say "No" to that question again.

Until then we made this coloring page! Color for Alex, show him he has friends! 

Color the page, post in it your window at home, on your refrigerator, post your pic on my Facebook page,, tweet me a pic at  @AmyCherrstrom with #Alexismypal #Art4Al or pin it on Pinterest:

The Cherrstrom Family

Thursday, November 13, 2014


Everyone has been asking how Jack is doing?  How does he cope with his brothers' illness?  Is he more mature?  Jack is often referred to as our unaffected son as he doesn't have Hunter Syndrome but he lives with it every day.  How can anyone really be unaffected?

A few months ago we met with Ohio's Senators and Representatives about Rare Disease, each meeting everyone kept inquiring about Jack, which was very kind and compassionate.

So lets find out how he's doing, here's a recent interview with him. We had to ease into some of the serious questions, and you'll see he's a man of few words!

Amy: If you could feed your brothers anything for dinner, what would you pick?

Jack: Gum

Jack and Nick
Alex & Jack, throw back to 2010
Amy: Do you have a favorite brother?

Jack: No. Both.

Amy: Do you want a sister?

Jack: No.

Amy: Are you going to be a Dad when you grow up?  How many kids will you have?

Jack: Yes, I am going to have 4 kids.

Amy: Wow, 4.  That's a lot.  Are you sure?  4.  That's how many I grew up with...

Jack: Yes 4.

Amy: What's your favorite sport?

Jack: Baseball

Amy: Do you want to be President?

Jack: Yes.

Amy: What platform would you run on?  What would you change, how would you get elected?

Jack: School would be 5 hours a day, 4 days a week

Amy: What do you want to be when you grow up?

Jack: A paleontologist.

Amy: I wanted to be an Oceanographer so I totally get that

Amy: What's the best way to make money?

Jack: Sell used golf balls.  Everyone wants the Pro V1s.  Those sell fast.

Amy: What's your favorite animal?

Jack: Buffalo
Buffalo by Jack

Amy: What's the best animal on the planet?
Duck Billed Platypus drawn by Jack

Jack: A duck billed platypus

Amy: What's your favorite seafood?

Jack: Crab

Nick chimes in Chicken Nuggets.

Amy: What's the best thing about living in Ohio?

Jack: Good schools

Amy: Is that what you really think?

Jack: Best roller coasters (Cedar Point)

Amy: If you could go anywhere in the world, where would you go?

Jack: England

Amy: If you could go anywhere in the United States, where would you go?

Jack: California

Amy: What would be your dream vacation?

Jack: Cedar Point for a week

Amy: If you ran a crabbing boat like on the show "Deadliest Catch", how many crab would you catch?

Jack: 3,313
Nick: 4

Amy: What's your favorite TV show and why?

Jack: Modern Family, it's so funny

Amy: Here's a multiple choice question:

Would you:

A.) Climb Mt. Everest
B.) Play with your x-Box all day
C.) Ride a wild buffalo

Jack: Climb Mt. Everest

Amy: How many days do you think you and "Man vs. Wild" could live in the woods?

Jack: 1,000,000 days

Now to your brothers

Amy: If you could do a fundraiser to raise money for MPS, what would you do?

Jack: Long Drive contest

Amy: What are you raising money for?

Jack: To pay for medical bills.

Amy: Well, sort of in a way...preventing more medical bills. We pay those ourselves.  We're raising money for research to cure MPS II, Hunter Syndrome.

Amy: Do you worry when Nick and Alex are getting their weekly infusions?

Jack at Lurie Children's Hospital in Chicago
Jack: No, but they have to get stuck with a needle every week.

Amy: Do you think it is hard when we go to Chicago and see all of their Doctors?

Jack: We have fun but I am sure they are sad.

Keeping It Real for Alex before the Clinical Trial in Chicago
Amy: Do you remember when Nick and Alex had surgeries?

Jack: Yes, I remember.  I felt bad for him.  Alex had a big cast on his neck.  

We cannot take credit for how wonderful Jack is, it's him!  He's such a great kid with a kind heart, and a calm, easy going demeanor.  He takes everything in stride and has such a positive attitude about pretty much everything in life including his brothers' illness.

We love you Jack!

The Cherrstrom Family