Since the launch of this site, we've gotten quite a few letters. Here are some of our favorites!
November 6, 2004
That was such a great video! I'm so glad Joseph is responding to the meds. Hopefully he will grow out of them. My parents tell me that I was on antibiotics every day for 4 years (that was the CF treatment in the 70's) and finally, I only had to do that and PT when I was sick.
Wishing Joseph a fun and normal childhood!
Denise
November 5, 2004
Dear Jon & Monica,
Thank you very much for contacting our foundation and sharing your wonderful story with us. The video you made is absolutely wonderful and very touching. Here at the foundation we have done many similar things. It is very important to get the facts and stories out there in order to fight this disease.
We will keep the DVD you sent us on file in case we do any projects where we think it will be useful. Thanks again for contacting us.
The Boomer Esiason Foundation
October 29, 2004
Hello,
My name is Debbie, I live in Florida. Renee sent me a copy of your video and I just wanted to say we really liked it. My daughter Kayla has CF, she is 10 mos old. Our stories sound very similar in that nobody in either one of our families has ever had CF. My baby is on enzymes too but so far she does not have to do the breathing treatments. I also have a 2yr old who we found is a carrier but does not have the disease. We are expecting our 3rd child in June and your video hit home for us with people wondering "how could you bring another baby into the world knowing about the disease!". We identified with you! I sent the video to Massachusetts for my parents to view and hopefully they will get a better understanding of CF, so Thank You for doing such a great video. Joseph is such a cutie!! Our best to you and your family and also please let Renee know that we appreciate her sending the video and I love her song, I look forward to hearing it on the radio and watching it top the charts soon!!!
Thanks again,
Debbie Kemmett
October 12, 2004
I got the video today, and I watched it - it is AMAZING! I didn't;t get to see the extras yet, but the video itself is great! I loved it......I cried as soon as Renee started to sing. What an awesome song. She has a great voice. I can't wait to hear more from her soon. I am a huge country fan......
Joseph is beautiful.
I noticed that he has a stomach tube for feeds. They wanted to do that to my now 6 year old son Zach, for 2 years they tried to convince me, but I just couldn't allow them to do it. He is gaining weight and holding his own now, so we beat it. (for now, hopefully forever!)
Joseph is 28 days older than my second son who has CF - Alex...he was born with a small bowel obstruction, so we knew immediately. Zach, like Joseph was almost 5 months old, and they first thought failure to thrive as well. It was a nightmare.
But, today is a totally different day and we are all happy and healthy as can be, considering. We now have a 3rd son, Tyler, he does not have CF, it's kind of weird! But we are very grateful.
Well, Thank you so much for sharing with the world what a wonderful child and family that you have.
How did you make the DVD? I would like to make something like that maybe to use as a tool for raising money for Great Strides or just as something for my family....if you can explain it to me!!
If I can ever be of any assistance to you and your family PLEASE just email me. No question is too small, or too weird, you could ask me anything.
Good Luck and God Bless.
Carey Sparbel
September 05, 2004
Renee,
Just wanted to thank you for the Child of Life cd you sent us. (We're
the family that came from Arkansas to Nashville for the CF Walk; best
friends with Phillip Tucker). Anyway, we have just finished watching the
cd again, and this time I just had to take time out to e-mail you. We
have been touched by it every time we watch it. It's just a wonderful,
professional, touching piece, and we love the Child of Life song. I do
hope RCA let's you put it on your CD and that it becomes a hit single
for you. Have you made any attempts to get this cd in the hands of CF
offices for their use in presentations and fundraising? I think it would
be great for that.
I hope that Joseph is doing well and staying healthy and active. Olivia
stayed well this summer and keeps active playing soccer. May God
continue to bless Joseph, Olivia and our families as we battle this
disease. Thank you for your efforts.
Sincerely,
Scott Morris
Searcy, Arkansas
August 30, 2004
Hi Jon and Monica,
First off, Dan and I want to thank you for inviting us to Joseph and
Hannah's birthday party. You have two beautiful children, and it's fun
to share in their special events. It was a fun party and we had a great
time (even if it was a little toasty . . . thank God for the occasional
breeze).
We would like to order a DVD version of the Child of Life video. We were
totally blown away . . . it is such a beautifully put together piece. I
think it's so important to reach out and share your experience with
others.
I would also like to be put on the list for a copy of the CD when that
comes out. Rene is such a wonderful talent . . . we wish her good luck
in securing a contract so she can get her music out there.
My 20-year-old great-nephew (grandson of my sister who was in Art's
class back in Tyler) was injured in a diving accident last month and is
now paralyzed from the neck down. He and his family have received a
tremendous amount of support. It would just be nice if they could hear
more from others who are going through the same thing . . . to offer
them hope and encouragement. David will soon be transferred from Sioux
Valley Hospital in Sioux Falls to a rehab center in Minneapolis. So
we're hoping and praying for the best for him.
Great to see you! And thanks again!
Love, Sharron
July 31, 2004
Dear Jon and Monica,
I just watched Joseph’s video for the 2^nd time. All I can say is you did an outstanding job.
My son Joshua is almost 3.5 and he was not diagnosed until April 12,
04. He has been a healthy child, no respiratory problems until June-
he had pneumonia. We found out he has CF because I mentioned to the
dr that he had oily stools. She wanted a stool sample and the next
thing I know we are heading to Arkansas Children’s hospital with a
diagnosis of CF.
We have two other children- a daughter who is 20 and a son who is 18
and so to have Joshua to have CF certainly blew us away because we
never suspected that.
I just want to thank you for making this video. It is awesome and I
love the song. My daughter sings and my son plays the guitar- I
would love for them to be able to play this at church one Sunday if
that is okay with your family. I also would like to play the dvd to
get people at my church interested in the Great Strides walk. Our
walk is in September.
Again, Thank you so much for making this video, thank you for
sharing your feelings. I am still struggling with just knowing.
Although we have to do the meds and the treatments and that is a
part of our lives- I still have to catch my breath when I think
Joshua has CF!
Thank you again to all of your family!
Laura
August 8, 2004
Jon,
This video is incredible. I hadn't had quality time to view it until now. If I can ever help with organizing a fundraiser, etc. please let me know. I an Entertainment Chair for American Cancer Society Relay for Life in Auburn, have done events for the Red Cross, etc. Joseph is such a beautiful child...and your story is inspirational. Renee's song is great -what a gift to you all!
Rosie
July 30, 2004
Thank you for being so willing to share your story.
My son Zach was born Febrary 2002 with cystic
fibrosis, so he is close in age to Joseph. He has
watched the video twice today and really likes it.
When he went to bed, I reassured him that we will
watch it again tomorrow.
This is a video I will share with our family and
friends. Thank you again for making it.
Sara Dawson
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