Team Super Jack 2015

Last weekend we spent time as a family to support our little Super Jack a the Great Strides walk for Cystic Fibrosis. This was the second year we did some fundraising and walked to support people living with CF.

If your new around these parts our son Jack was diagnosed at 2 weeks with Cystic Fibrosis. This isn't the path we expected to walk with our son but we would do anything and everything to support our son.

"Cystic fibrosis (CF) is a life-threatening genetic disease that primarily affects the lungs and digestive system. An estimated 30,000 children and adults in the United States (70,000 worldwide) have CF.
In people with CF, a defective gene and its protein product cause the body to produce unusually thick, sticky mucus that clogs the lungs and leads to life-threatening lung infection and obstructs the pancreas and stops natural enzymes from helping the body break down food and absorb vital nutrients.

In the 1950s, few children with CF lived to attend elementary school. Since then, tremendous progress in understanding and treating CF has led to dramatic improvements in the length and quality of life for those with CF. Many people with the disease can now expect to live into their 30s, 40s and beyond."

I'm so proud to say we far surpassed our goal of raising $1,500! Thanks to our friends, family and the blogging community for helping us with our fundraising goals.

The morning of the walk was crazy. The weather went from torrential downpours to the sun beaming down on us. Many of the families who have lost loved ones to Cystic Fibrosis thought it was their loved ones smiling down on all of us.

Jack was amazing! He just adores people and crowds so the walk was the perfect place for him to show off. We brought along Jack's wagon with us so he could ride but he wasn't very interested. He wanted to walk and he walked 2 laps around the track equalling a half mile!

Just as the walk ended the skies opened up and it poured. I'm so glad we got to participate and support a cause near and dear to our hearts.

One Year With Cystic Fibrosis

Being a mom of a child with Cystic Fibrosis isn't easy. My dream is to find a cure for Cystic Fibrosis. My son Jack has a fatal genetic disease that effects his lungs. Have you heard of CF? Thick mucous causes problems with the lungs and digestion, (Jack's lungs are the only organ affected) but can affect almost any organ in the body. There is no cure. Only half of those with cystic fibrosis are expected to live into their 40s, some younger, some older. On a daily basis Jack spends 2 hours on nebulizer treatments and chest therapy to keep his lungs clear.

Jack's 1st breathing treatment

It's been a year since we received the news that our 2 week old son had CF. During my pregnancy I had prenatal blood work done and I was informed I was a carrier of a Cystic Fibrosis gene. My husband also went in for testing and tested negative. During prenatal testing doctor's do not test for all the of the CF mutations. Brian's mutation is one that is not widely tested for. We had no idea our son would be born with cystic fibrosis. 

Great Strides walk for Cystic Fibrosis

Motherhood, for most, is a time filled with excitement and overwhelming joy. But what about moms like me who are faced with the unexpected? Potentially devastating news. Some moms were created to face challenges. One of them happens to be me. Being a mom of a child with CF is a very scary place. Not many understand it or the anxiety I struggle with. Each day I fear the cough, the chest rattle or the runny nose. I worry the next illness will end up with treatments every 4 hours, or worse, a hospital stay. I sometimes get lost in the anxiety and have trouble living in the here and now. The hardest thing for a parent to do is watching their child go through something really tough and not being able to fix it for them. I'm doing all I can and sometimes feel absolutely helpless. People with CF sometimes say it's like breathing through a straw. If you try it for long enough it feels as your lungs are straining, your head starts aching and your body starts sweating. Scary, right? 

Testing days at the clinic 

Life is not easy for someone with cystic fibrosis. My Super Jack is my inspiration in so many ways. I have not idea how I got so lucky. I can only hope I am strong enough to continue to fight for him. 

We are Team Super Jack during our walk a thon

Recently, I found "I Lived" by One Republic. I loved the song before watching the video and realizing they were featuring a child with CF. Every time I listen I get chocked up. 

Great Strides- Cystic Fibrosis Walk

Over the weekend we participated in the Great Strides Walk for Cystic Fibrosis. We created a team and Team Super Jack raised $2,325! I'm so grateful to my family and friends who donated and showed up to support us in our fight to keep Jack healthy and to get the word out about Cystic Fibrosis. This is a world I never thought I would be involved in but since I am I might as well fight as hard as I can to help find a cure for this devastating disease. 

In addition to the walk there is another way to help raise money for Cystic Fibrosis. Today, June 4th is National Running Day. Timex will donate $5 to the Cystic Fibrosis Foundation for every tweet or Instagram post containing:

#Imarunner

Please consider posting! 

Thanks you!