Your investment in UPMC Children’s Hospital of Pittsburgh provides families with the tools they need to become educated and strong advocates of children and adolescents with Down syndrome. This is Kamri’s story, as told by her mom, Casi.
Kamri is 7 years old. She was a birth diagnosis. So, we had no idea. We’d heard the words ‘Down syndrome’ before but didn’t know it would be a part of our family’s journey. It was hard to believe because Kamri was perfectly healthy.
After she was born, we went home and had a normal life with a very heavy diagnosis that seemed very scary and completely overwhelming.
Kamri’s Superpower
I never thought I’d have ‘The Lucky Few’ tattooed on my arm. I went with a group of moms to get the tattoo. There’s something special about the Down syndrome diagnosis and the kids who have Down syndrome. I can’t put my finger on it. It’s just there.
Some of our kids are verbal, some are non-verbal. Despite their differences, there is this thing that people are drawn to in the hearts and souls of those with Down syndrome. We call it Kamri’s superpower! She brings the good out in people and it makes others better.
Support from UPMC Children’s
Kamri has been treated at UPMC Children’s Down Syndrome Center since she was born. In December 2022, the hospital’s Hearing Center also became an important part of our lives.
The first several months of Kamri’s kindergarten experience last year were really hard. My husband, David, and I witnessed Kamri’s confidence start to disappear, and we didn’t fully understand why. Seeing Kamri sad broke our hearts.
Then we uncovered why her confidence may have changed. Kamri’s amazing teachers pointed out that her hearing was all but gone in the school setting.
Adding another disability “label” to Kamri seemed overwhelming at first, but we knew this was what our daughter needed. We consulted with the Down Syndrome Center at UPMC Children’s and sought treatment through the hospital’s Hearing Center. We also jumped in and became a part of Friends of the Hearing Center of UPMC Children’s and received the best care we could ask for!
We soon realized what we thought was a negative situation was actually an answer to our prayers. With this new diagnosis, Kamri was fitted for a Cochlear Baha 6 Sound Processor (aka, her ‘magic ears’) and although not the ideal visual look we had in mind, her ‘magic ears’ are a true miracle.
Rocking Out
Kamri did a complete 180 in all aspects of her daily life. Her school papers went from having two correct answers (out of 10 questions) to having only two wrong. Her vocabulary started to grow, she was stringing together multiple sentences, and most importantly, she was smiling at school. I can’t begin to even count the number of calls, emails, and texts we received complimenting how Kamri’s ‘magic ears’ completely changed our daughter. Our Kam Jam was back!
In the time since Kamri received her ‘magic ears,’ she’s rocked three new dance routines on stage, walked the school hallways countless times saying hi and offering hugs to friends (students and teachers), and proven to the world that she can do anything!
An Unexpected Setback
In early 2024, Kamri was in the PICU (Pediatric Intensive Care Unit) at UPMC Children’s for an extended time. Yes, it was awful, but the level of care at the hospital is AMAZING. I am shocked by what the hospital staff do daily and the care they give. David and I are so grateful to these special people. And will continue to shout our gratitude.
Life is Beautiful
We absolutely adore the care that we have been given at UPMC Children’s. There is a community that surrounds us here in Pittsburgh, and I hope everyone has that kind of support.
There’s not a lot of hope when you are first looking at this diagnosis. Just how able people like Kamri are is something that needs to be shared. We like to say, ‘What makes us different, also makes us beautiful.’ Life is absolutely beautiful with Kamri in it. We are blessed to count ourselves among the lucky few.