Thursday, April 19, 2012

Great Strides

Today is a special day. Today is Teresa's birthday. She had a fabulous day down in Nicaragua, where she has been living with her family for four months. She motorcycled around some volcanoes with her husband and enjoyed some private beach time. Sounds fabulous, right? Well, I want to wish her a happy birthday from here in Utah and hope that she'll come visit soon. If you would have told me back in the summer of 2004, when I knew of her in the apartment complex, but not her, that we would be friends, I would have laughed. She was pretty and popular and I wasn't. But I am so glad I know her. She has taught me a lot and been an inspiration.

In honor of Teresa, I am writing a special blog post. Now, I want to be clear that Teresa is many things. She is smart, crafty, a good photographer. But most importantly, Teresa is the sweetest, kindest, caring person---so giving. Plus look at that picture, gorgeous right? Jenny, Teresa's sister, and I frequently talk about how amazing she is. However, as multi-faceted as she is, Teresa does have CF (cystic fibrosis).

I wrote a post once before (see here) about Teresa and her sister, Jenny, who both have CF and what wonderful, fabulous, hardcore women they are. CF is a difficult disease. It requires people to spend hours a day doing treatments with vibrating vests and nebulizers. Daily they take handful after handful of pills---enzymes for digestion every time they eat, sometimes antibiotics or steroids, supplements....the list goes on.

Often the disease not only affects their lungs, but digestion, pancrease, and fertility. CFers are at high risk for diabetes as their pancrease is affected. It is not uncommon for CFers to received double lung transplants as their lung functioning drops to as low as below 20%. They are admitted for two weeks stays in the hospital when they become too sick (this can happen frequently throughout the year). These stays can be brought on by a simple cold bacteria becoming stuck in the sticky mucus in their lungs. This bacteria that might not even bother you and I, can turn into pneumonia for a CFer. A high calorie diet is a must for CF, as the body struggles to absorb nutrients through the mucus clogging their digestive track.

During hospital visits they are pumped full of concoctions of antibiotics around the clock and require PICC lines (think extreme IV's that start in their upper arm and end close to their heart). If over times they cannot access veins, they will receive a permanent port to administer drugs. Needless to say, this is a hard core disease. And for some, no matter how compliant they are with treatment, it cannot be controlled.

In 1959, the life expectancy for CF was 6 months. Now it is 37. CF has come such a longs way. A few months ago, a drug called Kalydeco was released, ahead of schedule no less, to treat at a cellular level CF. The only downside is it does not treat the most common genetic mutation causing CF. Kalydeco only treats the mutation affecting 4% of the CF community. But this of course, is a huge success and signals that other drugs to treat not just the side effects, but the cellular mutation might be close on the horizon for the majority of CFers.

However, cystic fibrosis research does not receive any government grants. The majority of the research funds are provided by the Cystic Fibrosis Foundation. This foundation holds walks across the country to raise money for research.

Jenny asked me to be apart of her team and walk with her at the Provo Great Strides Walk on June 2nd. I have gladly agreed to walk. I wish to raise money for Jenny and Teresa and all those affected by CF whether they have the disease, are a mother, sister, father, brother, or friend of a CFer. The money raised will make a different to this tight knit community.

Please donate toward this cause. Donate as a birthday gift to Teresa. Donate as an early birthday gift to me (two weeks after the walk). Donate because both of these women have husbands and children who are also affected by this disease. Donate because my boys have been tested for CF---it could have been us. Unfortunately it will be someone's child.

I know what it is like to have a sick child. To have your day to day life altered by the disease. To worry. To fret. To think at night over the dishes about what kind of life they will have as an adult. What kind of opportunities and things we take for granted will be unattainable. I know what it is like to wish for a "normal" life. I bet these CF mothers feel the same. I know that I worry and fret over Jenny and Teresa--and I am not even their mother. Donate. Please.

I know that it is always difficult financially, but please skip a meal out, skip a new sweater, skip the movie you were going to see. Anything you can spare is worth it to them. It helps. Kalydeco is proof that donations to Great Strides are worth it. I have a button on side bar that will allow you to donate to Jenny's team. It is just a click away.

If you would like to know more about being a CF mother and the affect this disease can have, please read Teresa's guest post on Jenny's blog here. There is also a great post on Life, Love and 65 Roses about how CF has affected the way she feels about her newest newborn because of her experiences with her girl who has CF. Here.


Jenny Livingston said...

Thank you, Holly. :) Thanks for EVERYTHING!

Teresa said...

Holly, I love you and miss you! What a kind (albeit slightly embarrassing) post. I think you know more about CF these days than I do! Thanks for all you are doing.