• Family


Age Group:

  • 10-13
  • |
  • 5-10


Profile Created: April 27, 2024

Our Story

We call him our little “Joy Boy” because he is exactly that. Dylan’s smile can truly light up a room and his funny little “quarks” can turn any frown upside down. His affectionate hugs can warm up the coldest of hearts. His deep giggles can soften anyone up and make everyone laugh.

Our “Darling Dilly” has the very best of superpowers…He brings out LOVE everywhere he goes.

Before he was even born, Dylan began taking his parents, Amber and Jordan Petersen, on an extraordinary path. Little did this family know what kind of “adventure” they were in for! The road with Dylan has turned out to be anything but predictable, with many challenging twists and unexpected turns. Throughout this journey, Dylan and his family have experienced their fair share of peaks and valleys. Yet, on this pathway, there have been breathtaking views of unique terrain in which many will never have the opportunity to experience.

It hasn’t been a trip that his family ever imagined taking, but despite it’s difficulties, they wouldn’t take back this unusual experience for the world. The journey began with Dylan taking his mom on an unexpected and suspenseful ride through pregnancy. Shortly after Amber became pregnant with him, it was discovered that she developed a rare condition called placenta previa, which takes place when the baby’s placenta covers the cervix – the outlet of the uterus.  This condition can be life threatening to both the mother and child, as placental abruption, severe hemorrhage, and premature birth are common complications. 

At that point, no one was worried since there was around a ninety-seven percent chance that the placenta would move away from the cervix before delivery.  However, as Amber’s pregnancy progressed, weekly scans showed that the placenta wouldn’t budge so a mandatory pre-term c-section was scheduled in order to ensure safety to both mother and baby.  On the morning of October 26th, 2015, baby Dylan came into the world after a complicated surgery that involved the use of forceps.  Thankfully, he showed minimal signs of stress other than facial bruising, so his parents were overjoyed to be “out of the woods” with a seemingly healthy baby and were sent home five days later to begin a happy new life together.

Dylan’s Blessings

There’s no doubt that any diagnosis involving disabilities can be extremely painful for a person to process. As Dylan’s mother, I believe we are entitled to that grief, as having a child like my son involves many losses in which we will never get to experience. However, compared to going down the typical path of life with my daughter, I have found the atypical journey with my son to be LOADED with more blessings than I could ever include here. These are a few that I’ve written down over time. Although there’s a vast range of ability levels in those with MED13L syndrome, if your child happens to be nonverbal and severely intellectually impacted like my son, you may find that this kind of life can still be wonderful too…

My Family is Blessed Because…

  • Our child is able to bring out the best in people. 
  • He motivates me to become a better mother, Jordan to be an involved father, and Brooklyn to be the best sister she can be!
  • We have learned the TRUE meaning of empathy, compassion, kindness, and love.
  • We’ve found excitement in the simple things in life just by watching Dylan interact with the world, such as…delightfully popping bubbles and squeezing Orbeez balls with amazement.  Bouncing on his trampoline while watching his favorite shows for hours. Watching his “fan friend” whirl around and smiling at it with wonder. Playing “peek-a-boo” with me until his tummy hurts from giggling so much. Rolling a ball back and forth and playing a fun game of “catch and fetch.” Gazing at the gorgeous landscapes on the TV’s screensaver with fascination. Smiling and cooing at trees as he watches their sun-glistened leaves blow gently in the wind. Endlessly laughing and squealing in delight while watching the clothes wash and dry in the machine.  Hugging his mommy, daddy, and sister like a little koala bear until he’s too weak to keep holding on!

More Possible “Perks” in Life With Dylan

  • Jordan and I will never have to face the sadness of the “empty nest syndrome.” We will always have our sweet son by our side.
  • I’ll always be his “first lady” and I won’t have to share him with anyone other than his sister! 🙂
  • He will likely never “tell us off” or say that we screwed up as his parents
  • He will *probably* never lie or manipulate…and if he does, it would undoubtedly be over something innocent.
  • We won’t have to worry about him teasing or bullying others – big fat NOPE!!
  • Brooklyn’s kids will have the coolest “Uncle Dilly” ever, who will likely be the guy who will get on the floor and happily play all day long with his nieces and nephews.