Mark and Lyndsee F., Cambria’s Grandparents
Cambria is 14 years old, 3’10″, and 40 pounds. The doctor who delivered her was the first to mention CdLS. She was medevacked to Tucson Medical Center, where they formalized her diagnosis, gave her a feeding tube, and were not very positive about Cambria’s future. The night Cambria was diagnosed, we were on the phone with her mom while on the CdLS Foundation’s website. One look at the other children on the site and we knew – this was our introduction to both CdLS and the Foundation. With information from the CdLS Foundation, research, and her parents’ determination, the tube was removed when Cambria was a year old.
She has continued, with tiny steps, to meet milestones.
Although she started life with significant issues, we are now at a place where we can focus more on preventative than reactive care. She enjoys taking and editing photos on her iPad, texting family and friends, listening to music, and pulling heads off dolls. She is becoming very talkative with her AAC device. She loves going places, seeing new things, and spending time with her teachers, friends, and therapists. If you pay attention, you will see a new way of looking at things and a great sense of humor.
“Though she be but little, she is fierce.”
As soon as we received the notification about the CdLS Foundation Clinic at Shriners, I contacted the Foundation and said we want in! Linda Peirce from the Family Service team was with us through the whole planning process. She encouraged, answered all questions, and suggested organizations that might help with travel and lodging. She was above and beyond and the reason we were able to attend. It was such a pleasure to put a face to the name when we met her at the clinic.
A turn in Cambria’s health (highly possible) was the only thing that would have kept us from going.
We were able to fly on Miracle Flights to attend the clinic. The suggested hotel had a shuttle service that picked us up at the airport AND shuttled us back and forth to the clinic.
The clinic experience was fantastic. We walked away with more information than we had and with clarity that the support team we had built for Cambria at home.
We are blessed with great care for her and great lines of communication.
With the help of the CdLS Foundation, we have now added Shriners Hospital as another layer of expertise to her care. We returned home with new information and questions for Cambria’s medical team, soft orthotics unavailable at home, and the possibility of a new bike.
Each specialist provided a summary of the examination for us to take with us as well as copies of the x-rays that were taken.
We felt heard.
I would encourage any family to try to attend a CdLS Specialty Clinic. The Foundation not only hosts but has resources to make it possible. Meeting other families in a small setting allowed for connection, sharing information and personal experience and encouragement given and received.
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