Our Story

Following is a story that I wrote for the MPS Society's Summer 2011 volume of their Courage magazine.  They invited us to be their "Warm Welcome" family for this issue.  This article was written before we knew that Caleb has the disease also.  We truly thought Caleb did not have it, and had him screened to rule it out...

Thanks for reading,

Tina Mulder

I have to be honest.  This is all a bit surreal to me.  Just this past December we were leading our lives, preparing for Christmas and trying to get to the root of our ten-year-old son’s enlarged liver.  Then, in March of this year, he was diagnosed with MPSIIIA and I am now introducing our family to the MPS community.  Surreal.

My name is Tina.  My husband is Mark, and we have two sons:  Jarod, the ten-year-old, and Caleb, who is five.  We live in Hudsonville, Michigan, where Mark is a high school history teacher and also the school’s varsity soccer coach for both boys and girls.  For six years now I have been running a part-time home daycare so that I can spend as much time with my boys as I can. 

Our boys keep us on our toes.  Jarod is a fun-loving boy with a huge heart.  We call him our “neighborhood greeter” as we live on a corner lot and he will try to chat with anyone walking or riding by.  He knows every child at his school and will greet each by name and ask for a “high-five” as he walks the halls.  He has the best belly-laugh in the world.  And the most amazing green eyes.  He plays AYSO soccer, and baseball with our local Little League’s Challenger Division.  He is a huge fan of the Detroit Red Wings and the Detroit Tigers.  He also loves our lower level local teams like the Grand Rapids Griffins and the West Michigan Whitecaps.  He loves to bring home programs from games or get yearbooks for the teams so that he can memorize all the players by name, face and number.  When he is awake, he is non-stop – riding his bike, shooting hockey pucks, dribbling a soccer ball or hitting whiffle balls in the yard, getting into the pantry for snacks, playing with cars and toys in the house or watching his favorite movies like The Mighty Ducks, The Big Green, or Miracle.  He does have his behavioral issues and he tires us out, but we wouldn’t change a thing.

Caleb is a funny, active, and sometimes sassy five-year-old.  He plays AYSO soccer and t-ball as well.  He attends preschool and absolutely loves it.  He enjoys going to the movies or the zoo, reading books, doing puzzles and playing games like Toy Story Yahtzee or Uno Moo.  He and Jarod absolutely adore one another, but they have a typical brotherly relationship: sometimes hugging, sometimes fighting.  I love it when they are getting along and Jarod will throw an arm around Caleb’s shoulder and say “Caleb, we’re brothers, right?” with a big smile on his face.

As a family we are active in our church, love to go to the beach in the summer, go camping in our pop-up or hiking in the woods.  We like to attend a few hockey or baseball games each year. We love to spend time together, whether that is going to the zoo, playing at our neighborhood park or just playing baseball or basketball at home. We typically have to pick activities that are “Jarod friendly”, as I’m sure most of you can understand.  Mark and I are trying to savor every moment now more than ever.

As far as Jarod’s diagnosis, I’ll begin our story on a snowy Christmas morning in 2000 when we were given the best gift ever.  Jarod made his entrance to the world, a little peanut at 6 lbs. 13 oz., with soft brown hair and big, dark eyes.  He stole my heart that day and has had it ever since.  He was happy and healthy and ate like a champ.  He was our first child and we cherished every little smile, laugh and sigh.  His growth and development seemed normal and he hit every physical milestone just when he should.  He had many ear infections between the age of one and two and subsequently had tubes placed.  I began noticing when he was a toddler that I didn’t think his speech was where it should be, but when I mentioned it to our pediatrician, he told me not to worry.  “Every child develops at their own pace…boys typically develop speech slower than girls…don’t compare him to other children.”  But we parents know, don’t we?  I kept pestering and he finally sent me on to our county’s early childhood program where we learned he was indeed behind.  He started speech therapy at the age of three.  Things seemed to be progressing well, but Jarod always seemed to be a little “different”.  He never really played with other children, but more alongside them.  He would have huge temper tantrums if he didn’t get his way. 

Kindergarten was a big year.  We got a call from his teacher telling us they thought Jarod should have some testing done and had we ever heard of Asperger’s?  Although he showed some characteristics of Autism he didn’t fall on the spectrum and it was ruled out.  We also learned that year that he is hearing-impaired (moderate high frequency loss) and were working on getting him hearing aids.  The school system proceeded with IQ testing and Jarod’s score was 68.  We complained that they tested him before he had the aids and wondered how much of his score reflected the fact that he had been hearing-impaired his whole life.  Once he got his hearing aids I think we all expected his development to catch up, but it never did.  The school psychologist started using the words “cognitively impaired”, but we resisted.  We wanted to give him time.

Due to Jarod needing more one-on-one time than was possible in his current resource setting, and his frequent behavioral outbursts and tantrums, we reluctantly placed him in our school system’s Cognitively Impaired program when he entered second grade.  It was a huge hurdle for us to overcome and it broke our hearts.  But, his teachers there are wonderful and love him to pieces.  They go above and beyond to get him what he needs and help him to be and feel as successful as he can.  He currently reads at a Kindergarten level and can do simple addition, etc.   He loves the social aspect of school and enjoys being with all of his friends.

So we continued life for the next year trying to give him all of the love and resources we could to help him to learn, express himself and control his behavior, hoping to usher him into adulthood someday, ready to be the best he can.  And then, last June, our pediatrician (a new one since his preschool days) noticed that his liver was enlarged at a routine physical exam.  She tried not to scare us and ordered an ultrasound and some urine/blood tests.  His liver was moderately enlarged, and so was his spleen.  More tests.  No answers.  October of 2010 brought a liver biopsy and still no answers.  Then, in December, we met with a metabolic specialist from the University of Michigan.  That was the first time we ever heard the word “mucopolysaccharidosis”.  

In March we were given Jarod’s diagnosis of MPS III and were completely devastated.  What a paradigm shift to go from wondering what kind of future our son will have to realizing that our son is slowly dying and that we will be fighting forever for any future for him.  But we will fight.  We pray. We hope.  We are trying to plug ourselves into the right places with the right doctors.  We’ve learned so much in the last few months.  I’ll admit the future is frightening, but in the midst of all of this we are realizing how blessed we are.  Blessed that Jarod is doing as well as he is for his age.  Blessed with family and friends who surround us with love and support.  Blessed that Jarod’s teachers and the staff at his school absolutely love him and will do anything for him.  Blessed that so many of you have already reached out to us with a helping hand.