Dear Friends and Family,
By now you have probably heard Justin or I explain, “It’s all we know,” when asked about raising a child with Cystic Fibrosis. This past year we have begun to truly feel this way. The daily regimen of treatments and medications in which we were at one point bombarded with now feel normal, like changing a diaper, or giving a bath. Ojaio is as healthy as any other three year old. While we are always living with CF, these days, we have been able to focus more on living.
From the heart of someone surrounded by Ojaio’s love everyday, let me tell you a little bit about her spirit. Ojaio is determined, loving, dramatic, independent, funny and extremely intelligent. The first time we played the memory game, she won. Ojaio is dainty, and at times prissy, but very strong. Sometimes she amazes us with her grip, or by the things she can lift over her head. She prefers hopping, skipping and tip-toeing to walking, she can shake her booty and carry a tune. Ojaio is special. She makes friends with everyone she meets, she knows how to be cute, and she eats up attention.
Some of Ojaio’s favorites are books, chocolate, our dog Oka, and her cousin Rhianna. She is athletic, and interested in soccer balls, fishing and bicycles, yet equally enamored by dress up, nail polish, and anything in the color pink. She sings, she dances, she giggles. She is hugs, she is cuddles, she is kisses. Ojaio is love.
Though we have become used to it, living with Cystic Fibrosis and keeping up with all it entails is a full-time job. Throughout the day Ojaio takes seven different medications multiple times. When she is healthy she does two half-hour breathing treatments each day, and when she is sick, this doubles. When things are going well, we see the CF team every two months. Ojaio has five doctors, a dietitian, a nurse case manager, two respiratory technicians, a physical therapist, and a social worker. This is what it takes to keep Ojaio alive.
For Justin and I, parenting is more than providing shelter, ensuring proper growth and love. It also means investing in new therapies, and a cure for Cystic Fibrosis. I truly believe we will find a cure in Ojaio’s lifetime, but only money will make that possible. Drug companies and the government will not invest in CF, because it is not profitable — only 30,000 Americans suffer from this disease. It is up to us to give our kids a long life.
Cystic Fibrosis is the number one genetic killer of Children in the US. While the median age of survival is 37, as hard as we try, sometimes it doesn’t matter. CF does not discriminate. More than 60% of kids with CF won’t make it to adulthood. My cousin Megan lost her precious son Liam to CF as an infant. Just last month, an eight year old lost her life to this disease. We CANNOT let this happen to our Ojaio.
Times are tough, but please give what you can. Five bucks will bring us that much closer to a cure. Any amount is appreciated.
After you give, please send this to your friends and family. Justin and I need the world to know how special Ojaio is, how much we need her in it. Thank you.
To make a donation, please visit http://www.cff.org/Great_Strides/HollyReynolds
Words cannot express our gratitude. Thank you so much,
Holly, Justin and Ojaio