‘Will Nash be a baby forever?’ There are days where it hits me like a ton of bricks. More than the pain, I feel joy.’: Mom shares son’s journey with rare ADNP syndrome, ‘I can’t imagine a world without him’

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“I had a normal pregnancy with no complications, other than hyperemesis. The ultrasounds were perfect, and his birth was perfect and healing. But as he started growing, we noticed he wasn’t meeting his milestones at all. He wasn’t babbling, rolling, or sitting up. The doctors told us Nash just had a large head and he would catch up, but my mama gut knew something was wrong.

After wrestling with pediatrician after pediatrician, we found one who would finally listen and she ordered an MRI for Nash. At this point, I think we were past wondering if something was wrong. We just wanted SOMETHING, some kind of diagnosis, so we could help our little guy thrive.

Courtesy of Faith

We waited for the phone call that would change our lives forever. On October 3, 2018, my phone rang. It was Nash’s neurologist. He had said they had a diagnosis — ADNP syndrome. The first words out of my mouth were, ‘Is it fatal?’ He told me there weren’t enough studies to show the life expectancy of someone with ADNP syndrome, but it didn’t seem he would have any shorter of a life. A giant wave of relief washed over my whole body. But it was short-lived.

Mary Kathryn Photography

I thought this was the end of our worries, but it wasn’t. Following his diagnosis was a whole lot more testing. Some children with ADNP have issues with their organ functions and hormones among other things. We had booked lots of specialist appointments and thankfully, Nash checked out perfectly, minus the fact he needs thick liquids so he doesn’t aspirate, and he does have a few GI issues.

Amanda Ellis Photography

In this whole journey, I had peace. And if you know me, I’m a naturally anxious person. But I felt God’s presence so heavily in a way I can’t even describe. I think from the outside looking in, it seems so scary and overwhelming (and it is, it so is). I also think God gives you the graces you need in these moments to get through.

Courtesy of Faith

Most days with Nash are amazing and light-hearted, but then there are days where it hits me like a ton of bricks…

I feel it when we’re at the park, and a mom comes up to me with her chatty 3-year-old running around and she asks, ‘How old is he?’ and hesitantly, I say, ‘He’s almost 4.’

I feel it when his sister asks, ‘Will Nash be a baby forever?’ I feel it when I see kids his and his sister’s age, running hand in hand, or swimming together at the pool. And when we’re in therapy instead of a play date. Or at a specialist appointment.

Courtesy of Faith

But I’m happy to say I don’t feel it often. More than that, I feel the joy he brings to everyone who meets him. I feel the love when we walk into therapy every week and are greeted like we’re family. When you meet a milestone, it’s never taken for granted and is celebrated like he just won an Olympic medal by everyone around him.

More than the pain, I feel the excitement from him when I go to get him out of his crib in the morning, like he hasn’t seen me in months. I love how he stims when he’s excited and his happy squeal when he’s about to do something he loves. Seeing the way his sister loves him unconditionally and advocates for him sometimes more than I do is incredible.

Rohr With Me Photography

My advice for parents of children with special needs is to remember you know your child best. Better than the therapists, the socialists, the pediatricians. Always trust your gut and never be afraid to speak up and advocate for your child. Try not to compare, and always celebrate their milestones no matter how delayed.

You are our guy, Nash. You saved us in ways we didn’t know we needed to be saved and we praise God for you daily. I can’t imagine a world without you.”

Mary Kathryn Photography
Mary Kathryn Photography

This story was submitted to Love What Matters by Faith. You can follow their journey on Instagram. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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