Read the stories below from other parents explaining why Children's Cardiomyopathy Foundation plays such an important role in their lives and why supporting CCF is crucial.
Maxine explains:
Lost and terrified are the only two words that come to mind when Noah was diagnosed as a baby, and perhaps the phrase 'absolute horror'.
Support ... they say 'knowledge is power' and it's true. The information that CCF provides is vital. Noah has just started school. CCF sent me an information pack for the teacher which was so helpful.
Research ... its been almost five years since Noah's diagnosis and in that time science has already moved on. New medications that were not available to children with cardiomyopathy. Advances in the area of transplant surgery etc. CCF has a part to play in all of these things.
There is no cure for this condition, yet I believe one is just around the corner. And that's why charities like CCF are so important.
Lost and terrified are the only two words that come to mind when Noah was diagnosed as a baby, and perhaps the phrase 'absolute horror'.
Support ... they say 'knowledge is power' and it's true. The information that CCF provides is vital. Noah has just started school. CCF sent me an information pack for the teacher which was so helpful.
Research ... its been almost five years since Noah's diagnosis and in that time science has already moved on. New medications that were not available to children with cardiomyopathy. Advances in the area of transplant surgery etc. CCF has a part to play in all of these things.
There is no cure for this condition, yet I believe one is just around the corner. And that's why charities like CCF are so important.
Dorie explains:
There isn't any funding on the national level for this disease, yet the mortality rates are just like childhood cancer. There isn't a cure, only transplant as an option to continue to live. Transplant isn't a perfect answer either because it's another lifelong disease. My son may not have cardiomyopathy anymore, but he's still fighting to live everyday with the effects of his transplant. Some cancers are highly curable and patients can stay cancer free for a very long time. Not so with cardiomyopathy. We will always have to fight.
I survived Matt's transplant process because of my CCF heart sisters who had walked this road before me. Julie was my anchor and my map/compass.
Hallie explains:
We were lost when this little bird was diagnosed nearly 4 years ago and we were blessed enough to find CCF.
We found out that we are not alone and a really amazing organization is out there trying to do whatever they can to fight this horrible disease!
We were lost when this little bird was diagnosed nearly 4 years ago and we were blessed enough to find CCF.
We found out that we are not alone and a really amazing organization is out there trying to do whatever they can to fight this horrible disease!
Marki explains:
Zak was wheelchair bound because of HCM. Now he can run. His older brother, Quest, has HCM too.
I will fight for awareness every day if it means better treatments and more lives saved.
This picture of Zak is 24 hours after transplant on 9/1/2014.
Zak was wheelchair bound because of HCM. Now he can run. His older brother, Quest, has HCM too.
I will fight for awareness every day if it means better treatments and more lives saved.
This picture of Zak is 24 hours after transplant on 9/1/2014.
Kathi explains:
Sometimes you have school, and despite what the heart wants, sometimes the heart just can't.
Without CCF, as a parent you feel alone. CCF brought us all together as family. We can share in each other's highs, and support in each other's lows.
Sometimes you have school, and despite what the heart wants, sometimes the heart just can't.
Without CCF, as a parent you feel alone. CCF brought us all together as family. We can share in each other's highs, and support in each other's lows.
Millie explains:
Simply put ... this is why it is so important! Look at this precious boy.
Simply put ... this is why it is so important! Look at this precious boy.
Kristi explains:
We felt utterly alone without information or support. Because of CCF, we learned about medicines that very well contributed to the increase in heart function and survival.
CCF SAVES LIVES!
Please support our families!
We felt utterly alone without information or support. Because of CCF, we learned about medicines that very well contributed to the increase in heart function and survival.
CCF SAVES LIVES!
Please support our families!
Doll explains:
Without CCF, we would have felt absolutely lost as parents of a newly diagnosed child. We would have never met the wonderful support system that is CCF and all of it's members!
Lisa explains:
It even happens to the big kids and forever changes their outlook on life ...
It even happens to the big kids and forever changes their outlook on life ...
Andi explains:
CCF has been a huge resource for me for 6 years now. I have met so many people through their listserve and now Facebook that I wouldn't even call friends, they are family.
Without these ladies and gentlemen, I would not make it through some of my darkest days of dealing with Jax's HCM because my family and friends have no idea what I'm dealing with.
This organization does so much to help spread awareness and assist with research for our cardiomyopathy warriors as well.
Michelle explains:
Natalia (Nat) was diagnosed with RCM by accident when she needed stitches after blacking out from dehydration at 9. At the time, she was a cheerleader and had been a Martial Artist for 3 yrs.
If it had not been for her diagnosis, she most likely would have been another one of the statistics of kids in high school who die on the basketball court, etc.
I found CCF just as she was getting diagnosed and immediately found a group that I could share with and get information from. Her original doctor did not even refer me to the group, knew nothing about it.
We raise funds for awareness, family support, education, and many amazing research programs that are currently being done. We raise funds and do events in hope for a cure for these amazing heart warriors!
Natalia (Nat) was diagnosed with RCM by accident when she needed stitches after blacking out from dehydration at 9. At the time, she was a cheerleader and had been a Martial Artist for 3 yrs.
If it had not been for her diagnosis, she most likely would have been another one of the statistics of kids in high school who die on the basketball court, etc.
I found CCF just as she was getting diagnosed and immediately found a group that I could share with and get information from. Her original doctor did not even refer me to the group, knew nothing about it.
We raise funds for awareness, family support, education, and many amazing research programs that are currently being done. We raise funds and do events in hope for a cure for these amazing heart warriors!
Faith explains:
CCF is my "go to place" when I need advice, when I need someone to truly understand what I am going through. It's also the place I go to to help others in the same situation. It helps me to help others through cardiomyopathy.