Many people have asked us why we are raising funds now even though Ashley isn't listed for a transplant yet. First, let me say that we are raising funds now because we know that Ashley will need a liver transplant in the future. Honestly, we should have started raising funds for Ashley's medical care the day she was diagnosed at 6 weeks of age. Statistics are not in favor of Ashley living with her liver disease into adulthood. Statistics are not in favor of Ashley living through her teen years without a liver transplant. Therefore, we finally removed the denial curtain and let reality slap us in the face. It is because of research into Ashley's liver disease and conversations with her doctors that made us decide that fundraising was not only recommended but needed. Ashley will always require lifelong medical care even if she does beat the statistics.
Our second reason for doing fundraising is the cost of medicine, from hospital visits, labs to outpatient procedures; the cost of medicine and health care is extremely high. And those of us who are insured are the lucky ones. However, even with insurance, health care can still be outrageous.
The most important reason we started raising funds for Ashley's medical care is her future. My biggest fear is when Ashley is off to college and completely independent of her Dad and me, that she will have problems getting her own health insurance. However, with a medical fund in place it is one safety net that will make us feel comfortable letting her go and allow her to live her own life. If Ashley is unable to get her own insurance at least the medical fund will be there for her to use if needed.
Raising funds, I have found is not easy. I personally hate begging and pleading; I don't like feeling like a charity case. However, with the reasons above, I have learned that sacrificing my pride is so worth saving my child's life and giving her a chance at a future.
Our second reason for doing fundraising is the cost of medicine, from hospital visits, labs to outpatient procedures; the cost of medicine and health care is extremely high. And those of us who are insured are the lucky ones. However, even with insurance, health care can still be outrageous.
The most important reason we started raising funds for Ashley's medical care is her future. My biggest fear is when Ashley is off to college and completely independent of her Dad and me, that she will have problems getting her own health insurance. However, with a medical fund in place it is one safety net that will make us feel comfortable letting her go and allow her to live her own life. If Ashley is unable to get her own insurance at least the medical fund will be there for her to use if needed.
Raising funds, I have found is not easy. I personally hate begging and pleading; I don't like feeling like a charity case. However, with the reasons above, I have learned that sacrificing my pride is so worth saving my child's life and giving her a chance at a future.
Comments
Many do not understand that even with insurance medical expenses are overwhelming. Just $20 co-pays for a checkup with a regular pediatrician add up when there are so many every year. Plus the cost of transportation to and from appointments(gas prices being what they are only add to the stress), then there's parking too. Time off from work, medication co-pays, admission co-pays, doctor co-pays, deductibles for ER visits, admissions, outpatient procedures, outpatient surgery, etc. The lists goes on and on. Even tho staying at a Ronald McDonald house is less than a hotel it still adds up, especially when you are still paying on your mortgage on your home. Eating out while your child is admitted or eating in the hospital cafeteria is usually a lot more expensive.
Fund raising for chronic medical conditions such as BA and liver transplants is very necessary It is to ensure the patient and their families do not have to chose between making a mortgage payment or food and getting medications and doctors appointments.
I didn't mean to get on my soapbox but because of having two kids who've had liver transplants I know exactly where you are coming from. I wish you all the best of luck with your fund raising for Ashley's future.
Karen - Jen & Jon's mom