May 6, 2010

Hirschsprung's Disease Awareness and Fundraisers

Ok Hirschsprungs parents....I was ready to make a closing post and call it quits with blogging since Dylan has done soo well with potty training and it feels that our Hirschsprungs Journey has finally come to an end. But this has been a big part of our lives for 4 years now, we have battled, cried, and grieved through this long process until finally we have a reason to smile, laugh, rejoice and be happy. I am more than thankful that our journey has finally took a drastic turn for the better, but I can't forget about those children who are still struggling and still traveling the path we once traveled...With that being said I would like to come up with some ways to raise awareness for Hirschsprung's Disease but also fundraise for a good cause such as Cincinnati Children's Colorectal Center. If you have any thoughts or suggestions please feel free to comment below. Our Hirschsprung's journey may be over but I would love to be able to give back and also raise awareness.

12 comments:

  1. Each year in October I do something HD-related for national Make A Difference Day sponsored by USA Weekend Magazine to raise funds and/or awareness. I usually donate to the HD Research Study at Johns Hopkins.

    Lori, mom of HD daughter, 24 yrs.
    www.myspace.com/HD_Hope
    ODolls4HD@yahoo.com

    ReplyDelete
  2. I live in toronto canada and have a 15 month old son with hirschsprungs and have been through so much with him and cant find any parent support groups he had his pull through surgery at 13 days old and we still have to do stims and irrigations to him 3 times aday would love to talk to someone please email me Thanks illin469_7@hotmail.com

    ReplyDelete
  3. Catrina - thanks for blogging your and Dylan's story! It's been amazing to read and find out you other moms face the same challanges as I do with my Ben who's 3 now. We're all in it together. Keep up your courage, mom of hd. I often pray for you in your challanges and discouraging times. God has answered many of our prayers and is truly a very present help in trouble. We've just come thru a hard time of the flu and/or enterocolitis. In the H for 1 1/2 days. It's taking Ben awhile to come around and for his bowels to move properly again.
    So, take care all of you!!!! Noreen

    ReplyDelete
  4. Another one from me!! I've always looked forward to reading the latest on this blog. Too bad we have to quit. :( Is there any other site that's similar- without having to sign up?

    ReplyDelete
  5. Noreen, I haven't really quit...and plan to do more as we reach new accomplishments, or obsticals...As of now Dylan is doing ok. But you will definitely hear more from us. Thank you for reading and if you ever need anything feel free to post here or email me, I am usually always checking back here as well.

    ReplyDelete
  6. Oh wow, my almost three year old has Hirschsprung's Disease and we are entering Potty Training. I am going to start reading the rest of your blog.

    ReplyDelete
  7. We just finished learning about Hirchsprungs in nursing school and I saw a special about it on Mystery Diagnosis. Just wanted you to know that it is a requirement to know about for State boards for an LPN. :) Praying for you all!!

    ReplyDelete
  8. Hi! I happened upon your blog while researching Cincinnati Children's Hospital --our newly adopted 5 year old son had HD and we are considering taking him for treatment at Cincinnati (not impressed with our local children's hospital's treatment so far!). Our son had 2 surgeries in China and has no large intestines left, which has left him with nonstop diarrhea. We are trying a dietary-drug-biofeedback combo for him to gain fecal continence, but we are prepared for the fact that this may not work and he will likely need an iliostomy bag. Did your son attend one of the camps at CCH? Any advice would be very welcome! jamie marylandmayhem.blogspot.com

    ReplyDelete
  9. forgot my email: jamietrickle@yahoo.com

    ReplyDelete
  10. Hey, just now saw your messages, I will send you an email when I get the time...Just a quick note, I highly recommend Cincinnati to anyone who has a child with HD or bowel issues....Dr. Levitt is wonderful and so well educated about these disorders. They are, after all, the one and only colorectal center for children...

    ReplyDelete
  11. Sorry i am not responding to comments properly, I have been missing in action due to just recently going back out in the "work world" and both of my boys are in preschool now so i have been busy....Will catch up with everyone as soon as I can...Hope all of you are doing well!!!

    ReplyDelete
  12. I have a 11 year old son that had a pull tthrough at 3 months old. He is autistic and I have always thought that this disease has had something good to do with it. If you have any information you can share with me please do. This is the first article I have found with HD and autism to be related.

    ReplyDelete