Since the launch of this site, we've gotten quite a few letters. Here are some of our favorites!
February 6, 2006
Jon and Monica,
I just watched your video and tears came to my eyes... it was beautiful and inspiring. First let me say: You son will make it because he has two wonderful caring parents and a family that is supportive. My name is Sandra and I am 35 - I have Cystic Fibrosis, I also have wonderful caring parents and a very supportive family. That is why I am still here. I also have two children, Tristan who is 8 and Tyler who is 2. They also keep me going!!!! (Exhaust me-- but keep me going!) I pray that your son, Joseph will stay healthy and strong. God bless him! My only advice is to keep him active. Soccer, baseball, hockey, whatever he likes to play -- let him play! It will help keep his lungs clear! Good luck to you and your family, You will always be in my prayers.
Sandra
December 1, 2004
Your website and video are amazing! I will be passing it on to everyone I can. My daughter Sydney was diagnosed with CF in June 2004, just a week after her first birthday so this really hits home with us. You have some amazing resources at your disposal and it is wonderful to see how you have put them to use. I pray everyday for the time to come soon when CF does stand for "CURE FOUND"!! Joseph is a beautiful little person who is so full of life, the song and website title are perfect for him.
Many Blessings,
Kelli and Sydney
http://pages.ivillage.com/sydneymyers
November 29, 2004
Hello
I just finished watching your video and it really tugged at my heart. I have four boys. My youngest who is 18 months has CF. Thank goodness the other three tested negative. We do have mandatory screening for newborns here in MA so my son was diagnosed at 3 weeks. We are fortunate that he is doing very well. He takes enzymes , liver meds. and vitamins but that’s it. At 17 months he weighed in just 2oz shy of 30 pounds. I am sending your info to my friends and family who are all so in denial. Thank you for sharing your son with me it was a pleasure meeting all of you. Wishing everyone the best of health this holiday season and all year round.
Lisa
November 12, 2004
Dear Jon and Monica,
Thank you for sharing such an inspiring video and what a beautiful song. I lost a brother to C.F. 8 years ago, he was 24. Thankfully through research and new treatments, children like Joseph will live longer, healthier lives and realize their dreams. A friend’s daughter was diagnosed about 22 years ago and I’ve been involved with the Canadian Cystic Fibrosis Foundation ever since. Kim is a beautiful 23 year old now, she has just recently achieved her dream of becoming a nurse, her Mom Chris is the President of the Canadian Cystic Fibrosis Foundation. Although we live in a very small town in British Columbia, Canada our chapter manages to fundraise more per capita than most other C.F. chapters across Canada. Like you, your family and friends, we too are looking for that day when we can have C.F. stand for Cure Found, what an awesome concept! I’ll forward your video on to as many people I can.
Wishing you all good health and much happiness,
Jo-Ann Wallis
November 12, 2004
Dear Jon and Monica,
Thank you for sharing such an inspiring video and what a beautiful song. I lost a brother to C.F. 8 years ago, he was 24. Thankfully through research and new treatments, children like Joseph will live longer, healthier lives and realize their dreams. A friend’s daughter was diagnosed about 22 years ago and I’ve been involved with the Canadian Cystic Fibrosis Foundation ever since. Kim is a beautiful 23 year old now, she has just recently achieved her dream of becoming a nurse, her Mom Chris is the President of the Canadian Cystic Fibrosis Foundation. Although we live in a very small town in British Columbia, Canada our chapter manages to fundraise more per capita than most other C.F. chapters across Canada. Like you, your family and friends, we too are looking for that day when we can have C.F. stand for Cure Found, what an awesome concept! I’ll forward your video on to as many people I can.
Wishing you all good health and much happiness,
Jo-Ann Wallis
November 8, 2004
Hi, my name is Christina and I just saw the child of life web-site that you created for your son. The video was amazing because it really hit home to me. My half sister has cystic fibrosis. She was diagnosed at the age of 6 months. They found it soon enough that she was not put on a feeding tube. Since I'm younger than she is, I'm not sure how quickly they started the breathing treatments, but I assume enzymes were started right away because that was the second sign they realized something was wrong. The first sign was that she had a salty taste, which the child they had before that did not.
We share a dad and she has a different mother. They separated when she was about 2 years old for reasons other than the CF. My sister lived with her mother growing up, so I only saw her every other weekend for the longest time. What I do remember is when she did come over, my father would treat his other two children differently than my sister. I hope you will be careful about this. I am the youngest of my fathers children and I've had a lot of problems forgiving my father for what he did in the past and some of the things he has done recently. It is very hard not to give too much attention to the child with CF and not the same amount to the child without. They will remember and I don't want that to happen to your sweet children.
My sister is now 27 years old. She had a perfectly normal life for the longest time. In high school, she ran track and played basketball often. She attended college and got her bachelor's degree and started working as an Accountant for several years. At the age of about 24 or 25, the CF started to take over and her condition started to worsen. When she was younger, she would go into the hospital about once a year for what she called a "tune-up". She was there a couple of days to a week and felt better. Then, it started to become about every 6 months. By the time she was 24 or 25, she had to quit work and go on disability because the long hours, even though a desk job, made it impossible for her to fight infections. She would get an infection, get better, go back to work, and get sick shortly after that again.
After some serious soul searching she decided to get a port put in her because her veins were destroyed. It is around her shoulder area and can be accessed for blood or ivs. That really seemed to help her hospital stays along because now she could go home sooner on IV antibiotics and get better at home. At the age of 26, she was told she needed to have a g-tube because she was losing too much weight. She is 5'8" and weighed only 104 lbs. Since the g-tube went in, she has to feed on that every night for 10 hours and then try to eat during the day when she is awake. She would do about 2-3 hours worth of treatments at home and then started therapy at the hospital every day for about an hour. Also at the age of 26, she went through the tests to see if she was qualified for a lung transplant list. The testing was exhausting for her, but the good news was that she qualified.
This month marked her 11 month on the transplant list and yesterday was one year since she had to move back home because she could no longer take care of her own place. She made a comment several days ago that she wasn't sure if she would make it a year on the transplant list and God heard her. Saturday night, we got the call saying she was going to have a double lung transplant as soon as they go the body to the hospital. This is what was going to save her life.
After about a 12 hour wait from the phone call, she was taken into surgery yesterday and received a double lung transplant. As of about an hour ago, she is diong wonderful and is expected to be moved out of ICU any time now. She had the surgery at Barnes Jewish Hospital in St. Louis, MO. She is one of the lucky ones that actually lived in St. Louis and didn't have to move here. Barnes has an extremely talented staff and is wonderful for transplants. There is a map at the hospital of all of the places people have come from to attend Barnes for transplant and it is simply amazing.
The whole reason I'm sharing all of this with you, is to wish you the best of luck with your son and there are ways to help make his life longer. As soon as he starts to go down hill, get him testing for transplant and get him on the list. My sister might not have seen her 28th birthday, but now as long as her body doesn't reject the new lungs (which isn't looking like it's going to happen because of the extensive matching they do) she will live to me by maid of honor, see my children born, see her niece grow up, get married, and buy a house and potentially live well into her 40s or longer.
I wish someone would have given me those words of encouragement when I was growing up, or even in the past couple of years. Things will be hard at times, but God will always find a way to make them better. He gave up a miracle on Sunday morning and I hope he will give you a miracle for your son when he needs it as well.
Best of luck to your family now and forever,
Christina Serati
My sister also has a web-site that might be helpful for more resources and to hear about exactly what she has been through. Please feel free to look at it and I hope it helps! http://www.geocities.com/cserati/
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