Our story begins the day God blessed us with the birth of our first baby, a beautiful girl we named Evie. Under most circumstances this first sentence would suggest the beginning of a normal, healthy life for a child who is loved and for whom there are many hopes and dreams. Unfortunately, this was not the case. Within days, Evie’s whole body began to shake. This turned into several trips to many different hospitals. Actually, as I look back, hospital visits, long stays and searching for specialists across the country, became second nature to us. Our focus back then, was finding a diagnosis and we searched HARD! It took us 22 years to find out Evie, our angel had CDKL5.
CDKL5 is a very rare disease. Please visit www.shemadeadifference.org to learn about Evie and CDKL5. Awareness is a big part of our mission. Although Evie cannot move without supervision, she is the light of our life. Even though she cannot talk, her gentle spirit, soft in nature, shines the light of beauty wherever she is.
If you‘ve ever had a child and tried everything to help them without success. You know what crazy is! We spent most of our lives trying to find a diagnosis or even just how to help her. We traveled the country, read, studied and loved. That was all we knew how to do. Here we are 22+ years later, and we have finally found her diagnosis and there is no cure!
The Lessons We Learned From Evie
Through it all, the needles, the seizures, the trips, the noise, the lack of sleep, the siblings, the diapers, the feeding tube, the surgeries, the frustration, reaching out for help, the horrible near loss…. the list goes on and on, stressed and frantic to find a solution. One day we realized that we had succeeded at one thing. We LOVED!
At wits end one day, I remember looking at Evie, and asking God “What do we do?” I knew then what was important was to focus on the beauty. Evie is a beautiful girl but we mean her inner beauty which has triumphed over clumsy parents, desperate parents and searching parents. Evie’s inside beauty finally allowed us to realize we were doing everything we could. We could finally crawl into bed at night and know that she knows we get it; because she smiles.
Love Hope & Cure Designs...What it is and Why Bling and Beauty?
We know surface beauty is just that, but our Evie taught us about inner beauty. She taught us how to love without condition! Taking what we’ve learned from Evie, we wanted to find a way to reach out to others struggling and suffering. There are so many people who suffer, those suffering from their disability or diagnosis, diseases that affect children and those that affect adults, repercussions of war and the caretakers who are affected with their sadness. So many beautiful people who need to be lifted. They need some bling and beauty! Their issues and situations can cause them to just feel a little defeated. They might need a little hug from a scarf, a little bling to lift their spirits, or a sweet gift from a friend to carry them through the rough time.
How can you Help?
Please join Love, Hope & Cure in supporting these beautify people in need. When you spend money on bling and beauty, spend it here. Buy bling, beauty or a sweet gift and in doing so pass on the greatest gift of hope a person could give. A blessing in honoring a cause!
We reach out to you for your support and to help us spread the word about Love, Hope & Cure Designs. Please help us honor Evie and the thousands like her who un-selfishly serve in ways they never thought possible.
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