BOISE, Idaho — This week we marked Rare Disease Day. It's a day to raise awareness for the millions of people around the world who are battling rare diseases. Over 6000 of these diseases are currently identified.
There are thousands of people living with rare diseases in our state. Many of them are children who are medically fragile and in need of constant and complex home care.
Natalie Stevens' daughter Marley Joy is one of those children. She was born with lissencephaly, a brain malformation that impacts every aspect of her development.
"So many of us that walk these journeys of rare diseases or have medically complex kids, we are in the weeds," said Meridian mom Natalie Stevens. "We are here and we don't want to stay in the weeds and be hidden, we want our stories told. We want our children, their value and their life to be celebrated!"
Steven's daughter Marley is now 18-years-old and she said each day they have with her is a miracle. She never thought they would be gifted this much time.
"In the very beginning, we were given a three to five-year life span, and this girl is 18. I think it's a testament to her will, our love, the support of many, and lots of prayers," said Stevens. "There's just this pureness about her. She's present all the time, and her world is truly those who are right there pouring into her loving on her. Her widespread impact without her ever saying a word is truly beautiful."
According to Rays for Rare, a nonprofit that helps support and advocate for families in Idaho with medically complex children, there are over four thousand children in the state with rare diseases or medically complex conditions. That number is growing with more people moving to Idaho. Rays for Rare is seeing more families in need of services than ever before.
The nonprofit offers support groups, activities, advocacy assistance, and even helps with house cleaning, yard work, and snow removal. The idea is to take some of the stress off of families who are already under so much pressure.
"I know It has exploded because there is such a need," Stevens said.
Stevens wrote a touching and emotional letter to her daughter, and Rays for Rare asked to make a video to go with it. It's an inside look at the heartbreak and the joy of having a medically fragile child. A world where another day together isn't always promised.
"For me, it was my way of pouring out my heart," Stevens told KTVB.
The video was combined with home videos and Stevens' words, and the result was something that she will treasure forever.
The video and the letter have touched hearts all over our community. Stevens says Marley has taught her more about life and love than she could ever have known.
"I thank god I was chosen to be her mom," Stevens said. "There is beauty in the brokenness, and that is the storyline of our family."
Marley Stevens is an inspiration, and so is her mother. They are sharing their story, to spread awareness about what living with a rare disease is truly like. The ups and the downs, the joy and the pain.
"We want people to know our children, and to know that these beautiful souls are out there."
For more information on Rays for Rare, be a part of the community, and how to donate to the cause, people can visit their website here.
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