Kayla and Josh noticed their son Parker was falling behind in his development by about 12-months old, he was barely learning how to army crawl.  They went to a geneticist, and through genetic testing, Parker was diagnosed with ADNP syndrome– a genetic mutation which can include developmental delays, autism, and distinct facial features.  Josh and Kayla felt very fortunate to get a diagnosis as quickly as they did so they could come up with a game plan.

Overwhelm Sets in After Getting ADNP Syndrome Diagnosis

“I had already made up my mind,” Josh said, “If Parker’s got something, we are just going to ride this out.”  After receiving an ADNP syndrome diagnosis, he was ready to find resources, start therapy, and move on.  Parker was the 85th person to have been diagnosed with ADNP syndrome in the world.

Kayla’s reaction was different than her husbands, “It was really overwhelming.”  For a few nights, Kayla had trouble sleeping because she was constantly thinking about ADNP.  She calmed a little after she contacted the ADNP Kids Foundation and found fellow parents and a support group for guidance.

Hardest Part is Changing Your Expectations

“When you have a boy, you have an idea of what you’re expecting your life with your son to be,” Josh said.  He imagined taking him to baseball games, throwing a football around, playing other sports, etc.  “That kind of just goes out the window,” he said.  Compared to other children, there are things that Parker won’t be able to do with Josh.  But, Josh recognizes Parker does things other kids don’t do that makes him such a blessing.

Even though it took until 3 1/2 years old, Parker recently just started saying his first word.  It has been exciting for them to hear his voice and they celebrate every milestone.

“The chances of him living independently as an adult are very slim,” Kayla said.  Having to come to terms with that was challenging at first. They had to change their expectations of what they thought his life, and their lives would look like.  The burden seems less, however, as Kayla continues to fall more in love with her boy the older he gets. Parker is such a joy to be around that she doesn’t ever want him to leave.

Their Son with ADNP Syndrome Makes EVERYONE Happy

“He’s got this inner peace and joy that is just contagious,” Josh said.  Parker will go up to strangers and give them the biggest hug just because he wants to.  Like other children with ADNP syndrome, he gravitates towards adults and never hesitates to show them love.

“I feel like he’s changing all of us for the better,” Kayla said.  She has seen Parker interact with other people and knows he is changing them.  He easily brings out the best in others.  When Kayla has a tough day, Josh tells her to forget about everything and just go play with Parker.  It cheers her up every time.

Josh and Kayla’s friends see the challenges Parker’s parents have raising him, but they also see the joy in the experience.  Their friends do not pity them and in fact they’ve learned better how to accept people who are different.  When their own kids are around another child with a disability, they have learned to be more accepting as well.

“I Would Never Change Anything About Him”

“Enjoy it, it is a blessing,” Josh said.  “It won’t seem like a blessing in the beginning when you receive the diagnosis.  You will feel worried or even sad but there is so much joy ahead of you.  Many parents who have a child with ADNP syndrome say they wouldn’t change a thing about their child.  It may sound cliche but it is true.”

Kayla says connecting with fellow parents of children with ADNP is very helpful.  “They want to help you and they want to guide you,” she said.  Having some “understanding friends” to talk to when you are having a tough day is priceless.

“Our lives are so much better because of Parker,” said Kayla.  Josh and Kayla cannot say that enough.  They have had their challenges but the joys outweigh them every day.

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