During 105 Days of Love, we received this email from Tracy:
My granddaughter Malan Rose was diagnosed with CF at just 2 weeks old. For this first three months of her life we have been learning all about treatments, medicines and caring for someone with this disease.
We all take for granted and don’t even think about breathing every day. Our friends and family with CF battle with just taking a breath. Breathing, something seemingly easy is a constant struggle.
Nearly every CF drug and help for families with CF comes from funds raised by friends and family. Our goal is the help every child and young adult live longer, healthier lives so they can pursue their dreams.
We want to make sure we help to build on the incredible momentum the CF Foundation and Great Strides have started. While people with CF are living longer than in the past, we still lose precious young lives every day.
I am trying to get the word out. Great Strides is doing a CF walk here is Salt Lake City on May 18th and our family is walking to raise money. I am not sure how or if you can help but it never hurts to ask right?
Most people just think CF is a sickness that makes it hard to breathe like asthma but it is so much more. It is endless treatments even at 3 months old that will continue all of Malan’s life. Countless medicines, frequent doctor visits, many hospital stays and isolation from anything that can cause her harm. This disease is so rare as soon as they are diagnosed they are put on the “Make a wish” list. The fact is only 30,000 children and young adults in the US have this disease and 70,000 worldwide. They have made so much progress in just that last 10 years but much more work must be done so these kids can become adults.
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