We have always raised money for CF since Kaleb was diagnosed. He was diagnosed in March 2001 and less than two months later a few of us went to the walk with money in hand. Every year it is different, in amount we raise and how much support and awareness we have. Sometimes I am really excited about raising money and have great ideas, and other years I just barely survive and get what I can.
Fundraising for CF is difficult on many levels. It can become a full time job and it can be emotionally exhausting. This is much more than a "good deed" for me. This is more than just raising money for a charity. My son's life depends on this. That is a lot of pressure.
Just recently I have felt God tugging at my heart regarding my involvement in raising money and awareness. He brought me several opportunities in regards to speaking and leadership within the CF community. As He brought these opportunities to me, I was mindful to pray that He would continue to direct my path regarding all of this. I fought Him a bit. I dug in and I was dragging my feet. I wasn't so sure about all of this. What if I fail? What if I don't raise that much? What if no one listens?
My blog and fundraising has gained more popularity this year. We started a little earlier and I have put much more work into this years efforts. I am trying to be creative and get our ideas out there to get as many people involved as possible. Instead of relying on a few big donors, I am attempting to get a lot more people involved on smaller levels so that it will add up to big things. So far, it is working.
Raising money and asking for money is also a tool to spread awareness about what CF is and how God is using this disease for His glory in our family. I want God to shine through and in our journey as a family as we deal with CF head on.
So many people don't know what CF is or don't understand it. What a lot of people don't know is that CF is an orphan disease. Meaning, it gets NO government funding. That is why we as parents have had to take on such a big role in fundraising. If we don't do it, it literally won't get done. There isn't money pouring in for research like for other diseases. If we want a cure, we have to fund it.
The more people that know what CF is, that know it is an orphan disease, that know how close we are to a cure, and that can share our story....the closer we get to actually raising the funds needed for the key research to find a cure! We have seen so many positive things lately regarding new drugs released to target the pseudomonas that plagues our son and many others with CF. This bacteria is nasty and it is resistant and resilient and we have to fight it so that when a cure is found, our kids lungs are in the shape to even be able to get that cure. Lung damage is permanent. So, if we can't fight these bacteria and keep the lungs healthy, it won't matter if there is a cure. The damage will be done. The CF Foundation has also had somewhat of a breakthrough with a drug company that is in the late phases of a drug that can possible be LIFE CHANGING in the CF world. It is being called "a cure" as it will be a daily pill that will change the way the body works on a cellular level. Although the one they have working now is not for Kaleb's mutation and genotype, it is a HUGE advancement and for the first time since we have been involved in the CF community, there is lots of HOPE around this.
I am so excited because things are falling into place. I have been asked to speak at several CF and Make A Wish events to share our story and help raise funds. I really LOVED doing this and started praying that God would continue to bring these opportunities to me. And He is. I will be speaking at a CF Fundraiser in April about our story and our fundraising. I was just asked to go speak to a local school about Kaleb and CF as they kick off their own fundraiser for a whole month for TEAM KALEB. I will speak again at the Make A Wish training in the spring and there are some media things in the works that I hope can happen so we can further share our story to bring HIM the glory and AWARENESS to CF.
Please join me in prayer for this. I LOVE sharing our story because I know God can be glorified and I know that awareness needs to be brought to this horrible disease. When I am speaking, I know it is what I am supposed to be doing!
I am looking for these chances to share our struggles, our life, our fundraising techniques, our passion in finding a cure. I want God to use these chances, my blog, my fb, and my interactions with those around me to help find a CURE, raise money, raise awareness, and show them God through it all. I know HE can do that.
CF is hard. To watch my son's body be ravaged by this disease is heartbreaking. To see him struggle and for our family to be strained as we daily battle this disease is so tiring. I am honest about our struggle. It isn't easy and I don't like it. It is hard on my son, the patient. It is hard on our marriage. It is difficult on Hannah as a sibling. It tests our Faith, our relationships, our family, our finances, our emotional stability. But... it is our journey. This is the path we are on and we will fight it. Together. And as we travel this journey, we hope that God can be glorified and positive things can be done to make strides for the future of what CF looks like. So that other families who hear those words that their child has CF can have a different journey than we do and can have a different future and outlook than those who are in it today.
And so I share our story. A story filled with many ups and downs and emotions. But through it all, I hope people can see in our story something wonderful. Some Hope.
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