Evey’s Story Update

Cally and Nate Johnson are neighbors and good friends of ours. They are excellent caregivers to all four children while their youngest daughter, Evey, has an extremely rare genetic disorder known as Koolen-de Vries Syndrome. Their example gives me strength and encourages me to do better. I’m inspired by them and appreciate their friendship. Our circumstances are completely different, but we share the same concern, love and responsibility for another individual with special needs. Cally was my first guest author on October 27, 2013 and she updated us on Evey’s Story on July 20, 2014. I hope they will continue to give us updates every few months. Evey’s progression is astounding.

Special needs children, and adults for that matter, are simply amazing! Their drive to survive and their determination to accomplish things which we do with little effort or thought motivates me to be more grateful for my health, strength and abilities.

Caregivers are wonderful and the ones they care for wouldn’t do nearly as well without their love and support. The tenderness I see and feel between a caregiver and the person with special needs uplifts me. Cally and Evey’s love for one another is so evident. Watch the videos below and you’ll see and feel it too.

Written by Cally Johnson

Since we last updated on Evey, we have had several exciting developments. As we’ve previously mentioned, Evey’s scoliosis requires her to have two titanium rods in her back that have to be surgically expanded every few months. However, just recently the FDA finally approved a magnetic titanium rod that would allow them to grow Evey’s spine without surgery. Last November the doctors switched out Evey’s old titanium rods with the new magnetic rods and now she’s able to get them expanded above the skin with a 30 second procedure in-office. She’s one of the first 100 people to receive this device in the United States and is participating in many research studies because of this. It is quite an exciting time and we are so grateful for modern technology which has enabled us to avoid frequent surgeries.

Video of Evey at her first magnetic expansion with the MAGEC rods. It was incredible. Instead of surgery every few months, we go into the office every 2 months for this simple expansion. This is life changing for us. The only bad news is her left rod is slipping/migrating off her rib and will likely need to be replaced surgically within the year. For now, she was lengthened almost a centimeter. We are so humbled and grateful for the amazing doctors and modern technology that saved our daughter’s life.

Because of fewer surgeries, Evey has been able to progress more and has learned to stand and take a few steps on her own. This has been such an exciting time for us because several doctors were not even sure if she’d ever walk on her own. It has been our goal since day one to have Evey walking before her 3rd birthday, which is May 31st.

We are so proud of all she has accomplished and continue to learn that our caregiving journey is a Marathon and not a Sprint. There continue to be highs and lows and battles to fight, but we’re feeling more seasoned and continue to be in awe at all of the goodness that surround us. There continues to be people that reach out and serve and bless us with their examples. We have learned to love and appreciate the marathon and are so grateful for all Evey has taught us. We look forward to the many lessons and blessings that will continue to come our way on Evey’s journey.

Thank you Cally for giving us an update! We are happy for Evey and your family. 



Evey’s Story

Knowing other caregivers and their stories gives me strength and encourages me to do better. I enjoy my connection and the inspiration I get from each one. Our circumstances may be different but we share the same concern, love and responsibility for another individual with special needs. I want to share some of these amazing stories on my Sunday posts. My first guest authors are Nate and Cally Johnson.

Written by, Cally Johnson

“On May 31, 2012 our lives dramatically changed for the better.  Our daughter Evey, our fourth child, was born that day with an extremely rare genetic disorder called 17q21.31 micro-deletion syndrome.  It is also known as Koolen-de Vries Syndrome.

When she was born, it was clear that there were aspects of her that were unique.  Her look was not typical, some physical characteristics were cause for concern, and, she neither woke nor ate…nor cried.  But, despite all this – she seemed calm, peaceful, and content.  She didn’t show any signs of pain, and she didn’t seem to complain.

After a difficult first month of trouble breathing and eating, and waking up only rarely, we received the official diagnosis of her rare condition.

There are only 200 reported cases throughout the world of this syndrome.  Essentially, Evey is missing hundreds of genes throughout her 17th chromosome, which, in turn, affects every cell in her body, and how she develops both physically and mentally.

Evey requires constant care and attention.  She receives all of her food through a feeding tube, which begins in her stomach, and deposits food directly into her intestines.  She has had several surgeries to fix her many physical malformations, and will need dozens more throughout her lifetime.

If we had a nickel for every time someone asked us: “How do you do it?” – we would have quite a few dollars, and, we would like to use those dollars for some cupcakes on the days we really need them.  So cupcakes, donuts, and ice cream are a lot of the answer to how we do it.

We give to Evey, because she gives us so much in return.  When we have sleepless night after sleepless night, she smiles at us and we immediately feel her giant spirit, and it feeds our tired souls.  When she requires lengthy hospital stays, we watch all those medical professionals fall in love with her and feed off her joy and happiness.  She always radiates warmth and is never bitter at what life has dealt her.  Beyond that – we’re constantly crossing paths with people whose family members are in even more dire circumstances than ours and Evey’s: people whose family members and friends have never come home from the hospital, requiring constant care; families whose children and friends have come and gone in what seems like the blink of an eye.  For all the challenges and exhaustion, just having Evey with us is a constant reminder of how blessed we are.  And, we are fortunate to be surrounded by family and friends who lift and strengthen us – so, we can make it, for however long the journey.

She is strong, so we are strong.  She is happy, so we are happy.  She never complains, so, why should we?”

Thank you Nate and Cally for sharing your inspiring story.