Hey all. I want to tell you all about our friend Daphni Jo. She is a beautiful girl that lives in Cle Elum Washington.
Daphni is 8 years old and is such a wonderful child. Like Abby she is also living with Rett Syndrome. On top of the daily challenges of that she has Diabetes and has to wear an insulin pump. In the last few months her seizures have been coming more and more often.
We first came across Daphni Jo on the internet when we were first facing our Abby's diagnosis. I can remember searching the internet to find anything about Rett Syndrome that would give us any hope at all that Abby would be able to enjoy her life. I was devastated. I can still remember where I was sitting when I started screaming for my husband to come look at this video of a little red head with Rett Syndrome and she was swimming, Swimming and giggling and she had the biggest smile on her face. She was so happy. It was the first light we had seen in months. Over the next few days I watched this video dozens of times. I would laugh and cry at the same time. I soon started Abby in swim therapy with her OT. Abby still swims today..because of Daphni Jo and she loves it. (DAPHNI'S VIDEO)
A few months later I met her Mom..Jerimarie online and we became friends. We met the next year in person and this family is just so amazing. Daphni's Mother and I just may have been separated at birth.
In the last few months they have really been struggling with Daphni's safety. Her bed broke. Daphni has seizures and Mom and Dad have spent many a sleepless night watching over her. The one thing that gets recommended when your daughter is diagnosed is to get a Sleepsafe bed. Easier said then done. They run between 5 and 8 thousand dollars. I know that we personally have asked 2 wish foundations and the Love fund and have been denied.
The Sleepsafe Bed has special sides and a special mattress and is able to go up and down either by hand crank or fully electric. It may seem like a big expense for a layman but they really arn't much more than a hosptial bed and 10 times as safe.
When you have a child who can't speak or call out to you..that can't say Mom or Dad or even help their safety is so so important. If Daphni were to wiggle out of bed by accident or seizure she could suffer great harm. And her mother has to live with this every night.
The Cle Elum community is putting on a fundraiser for Daphni Jo to try to raise the funds to get her this bed. My request is that anyone who is willing to donate do so. I am so far away or Id be right there doing everything I could.
To view the article in their local paper please click here