Part 1 of Hope, Pass It On

about the authors:

Paul and Trisha Petersen have five children, from their early 30’s to their youngest, Owin, who, at the time of this entry, was just 6. Owin has Duchenne Muscular Dystrophy (DMD) and Autism Spectrum Disorder (ASD). You can follow Owin’s journey by scanning the QR code at the end of this story.

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We were asked what are the challenges of raising a child like Owin, what is different? I sat and I had to really think about this one.

We have five children including Owin and all of them have and had their own set of challenges. Every child is different and needs to be nurtured and cared for in a way that works for them. In the same way, every child is the same. They all have the same basic needs, wants and desires. They and we, all have the need to learn, explore, play and to be loved.

So, what makes Owin different and what are the extra challenges is both easy and hard to answer. 

A Rocky Start

Let me start with a bit of background for you, or in this case; our story.

We adopted Owin officially on December 27th 2018, but he has been in our lives since the day he was released from the hospital and in our hearts from the moment we saw him.

Owin was born under very tough circumstances. Drug and alcohol use were not only suspected but tests proved that Owin was exposed multiple times through the pregnancy.  Still, he was born at a healthy body weight and as the perfect little man he is. 

As time went on, we started noticing milestones were being missed or severely delayed such as first words, crawling, first steps, etc. As most parents do, we brought our concerns to the world’s best pediatrician, Dr. Reidy. Tests were performed and specialists were seen and all was going as well as could be expected.

We Waited

We found out that Owin was having some hearing issues and that was probably the cause of the speech delays. Our ENT placed tubes in Owin’s ears and we waited. We noticed he was having issues with motor development so we were assigned a physical therapist, and we waited. Difficulty swallowing, in comes feeding therapy, and we waited.

We waited for all of these measures to make a difference, they didn’t. Finally, we were referred to a Developmental Pediatrician who diagnosed Owin with Autism Spectrum Disorder or ASD.   

As we traversed the world of Autism, we were told to expect delays, and missed milestones. We were told that many children on the spectrum can begin speaking on their own time line but that many stay nonverbal their entire lives.

But through it all, we were still concerned that something was being missed. Owin’s motor deficits were still not being explained in a way that made us happy. Dr. Reidy ordered some blood work for Owin’s two year check up and found that he had some abnormality in his ALT and AST, he was sick at the time, so we waited a month and reran the tests. The results were even higher numbers. We started running blood work every month and started to see a GI doctor to rule out a metabolic disorder.

The News

At the same time, Dr. Reidy had arranged for us to see a Geneticist to try and find a reason for all of these issues. May 24th 2019, that was the day we were given the news that changed all of our lives, Muscular Dystrophy.

Our entire family structure was rocked.

The Geneticist explained that Owin had a deletion in his dystrophin gene. He was missing exon 48-50 and that meant he had either Becker or Duchenne Muscular Dystrophy and we would be referred to the Neuromuscular Clinic.

We were also told to not to Google the implications of the results; Yeah right! I am not sure we even made it out of the parking lot before we had phones out and searching away. To be fair, when we got the results of the blood test, we had already gone to Doctor Google and in hind sight, I am glad we did.

I think it helped prepare us for what, in our hearts, we knew was coming.

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To read part 2 of the story click here.

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