Meet the Calvert Family

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Lacey and Daphne

As the Calvert family, we like to describe ourselves as a disorganized, (yet happy) and chaotic (yet loving) family of 5! My husband, Leigh is in Real Estate and now runs the Portland Strollathon with Rettsyndrome.org each fall.  I am lucky enough to stay home with the 3 kids and have recently taken on the role of the State Representative for Rettsyndrome.org. I am also on the fundraising committee with NWRSA. This is our story of Daphne’s diagnosis:

Sadie, Daphne, & Dean.

When Daphne was born, she didn’t pass her hearing test. By 6 months old we found out she has sensorineural hearing loss and she needed to be tested. She got her hearing aids at 10 months and we learned through a sedated test along with genetics that she has a very mild high frequency hearing loss. During this time of waiting for genetics to get back to us we saw Daphne start to regress.

The Calvert Family.

Loss of hand use, no crawling, no walking, no words. We started to get concerned that her hearing loss was the first sign of something bigger. When Daphne was 17 months, we got a confirmation that her hearing loss was not a cause of other medical symptoms or diseases and it is likely not to get worse over time. HAPPY DANCE!

But then we started to wonder: why is she regressing and missing milestones? Our PT at the time referenced a possibility of Rett and after googling it we immediately knew that is what she had. She was officially diagnosed with Rett Syndrome in February of 2018 at 20 months old. It has been a hard path although we try our best every day to make sure she is a happy girl. Daphne has an older sister Sadie who is 6, and a younger brother Dean, who is 1. They are both by FAR her favorite people!

We have learned to lean on each other as a family

This path we are on is not easy and can be very lonely at times. There are only a handful of people who know exactly what it is like to raise a child with Rett. We have learned to lean on each other as a family and understand the relationship between sibling, parent, daughter, son, and spouse. Every relationship between the 5 of us is unique and filled with love, but also, we have to learn and make adjustments most families don’t have to face. We focus a lot on the mental health of all of us and are supportive with whatever each other’s needs are. Saying that, NWRSA is a fantastic and unique way of support for our family as a whole. They are our “handful” of inspiration, care, friendships, and mentors that can get us through our days and weeks down this hard, (yet rewarding) path in front of us.

Looking forward to this new year we hope Daphne can continue to thrive in preschool and get her eye gaze machine! We have a trip planned to go to Disneyland this year too (her favorites are Disney Princesses so we thought it was time she meets them!). We have Rett Fundraising events to plan and attend throughout the year which is always something the whole family looks forward to. Planning and connection are absolutely paramount to our family continuing this journey!