Our story is airing on Discovery 11/24/08

Hirschsprung's Disease
#1

For those of you who don’t know this past April we worked with the discovery health channel to get the word out about our son’s mystery condition (ok after the mystery was solved). I’ve kept this hush hush until now. I looked on their website and finally we are listed for November 24th on the Discovery Health Channel, the show is called Mystery Diagnosis. Check with your local satelite/cable company to check the channel & time. I believe it comes on at 10pm. The title of the episode is The Woman with the Giant Lump…

Here is a blurb from their website:

The Woman with the Giant Lump

Soon after solid food is introduced into Tyler Berchielli’s diet, he begins to have infrequent bowel movements, sometimes just once a month. Daisy Hill, an active 41 year old bodybuilder, notices a painful lump in her jaw while training for a competition.

So please keep your eye out to watch our story. And grab the box of tissues. Hey I haven’t even seen the episode so it’s just as exciting to me as it is to you!!!

Janel mom to: Isabella(13), & Tyler(5)

#2

ok, I remarked the calander, I can not tell you how excited I am to see this, I have had this in my mind since you 1st said they were doing a show.

I can’t wait for more people to have heard the word hirschsprungs

#3

I know I’m so excited too.

I haven’t even been allowed to view the episode so I am curious what parts they edited out or not…you’ll see me a lot on the show…lol…I think I was in the majority of the scenes. There was one part where I had my stunt double fill in…lol…no seriously there were a couple of scenes that a friend of mine filled in, mostly hand or back shot scenes…

Janel

mom to:
Isabella(13), & Tyler(5) Hirschsprung’s Disease (dx 1/08,pull-thru 5/08, ostomy closure 6/08), daily bag & cath enemas for bowel managment(9/08)

#4

I just hope we get to see the super close up of your eyes closing and opening dramatically. :slight_smile: That part of the show cracks me up!

But seriously, I am going to watch it too. We don’t get Discovery Health, so I’ll have to see if it will be on TLC. But i’ll watch out for it!

#5

Oh yes they did lots of eye shots and I messed up a few times…lol…it was crazy you had to close your eyes and then open them and not blink…with the camera guy inches away from your face.

Believe me it is hard to do…lol…I’m not sure if it will be on tlc…maybe eventually it will but probably not 1st run.

Janel
mom to:
Isabella(13), & Tyler(5) Hirschsprung’s Disease (dx 1/08,pull-thru 5/08, ostomy closure 6/08), daily bag & cath enemas for bowel managment(9/08)

#6

Just watched the show (in complete tears the whole time) I thought they did a good job, how do you feel about the show.

Now i thought that Tylor had the pull through, I thought it was the same day as Max’s 5-7-08, but I might be thinking of another child.

#7

Yes I am very happy with how things turned out for the show. They did an awesome job retelling our story. Yes Tyler had his pullthru that date. They actually did all the filming a week before his pullthru. Since more things have gone on since then I kinda wish I would have waited but that’s ok it has all turned out well.

Janel
mom to:
Isabella(13), & Tyler(5) Hirschsprung’s Disease (dx 1/08,pull-thru 5/08, ostomy closure 6/08), cecostomy(11/08)

#8

I saw the re-airing at 2:00am this morning. They did such a wonderful
job with your story!!! I too was in tears. Our little Jacob will be
having his 2nd of his next 2 or 3 surgeries sometime in May of next
year. My husband and I are both so nervous for our little one.

Tysmom wrote:

#9

Janal,

I Tivo’ed your story and just got through watching it tonight. I cried like a baby!!! My son is 14 1/2 months old and was diagnosed and operated on at 4 days old. We had the Ostomy for the first six months of his life. I often thought how horrible this was to happen to such an innocent sweet little baby, but now that my son is older I can’t imagine going through the whole thing with a 2-4 year old. I am in admiration of your strength!!! I am soooo thankful that you were able to get the word out about this obscure disease. Luckily medical advancements are happening everyday. In my case our sons dialted bowel was noticed during my 32 week ultrasound, I often think how amazing that is. Your family is in my thoughts and prayers. Tyler is a cutie!!

Wendy-from Texas

#10

I’d like to see the show do you know if it will be airred again?
When & where?
I think my grandson has Hirschsrung’s disease. The doctors he’s been to say he is fine all behavior. I don’t believe it.
I live in Michigan do u have any idea of doctor that may be aware of this and could help my grandson. Thank you

#11

My daughter was diagnosed at 4 days and there was a bowel echo on her
ultrasound at 18 weeks. We never expected HD.
She has a colostomy and is 6 months now.

Aaron & Angela Hanke

#12

I am so bummed Imissed this!!!
I hope to see a re-airing.
I have a son, will be 6 in Jan. with HD. He had 2 pull thrus, the last one 3 yrs. ago.
I am in the process of writing a book to help get more info out to support parents when given the diagnosis…I want the book to be full of people’s experiences. Then I am also putting together a brochure I hope hospitals will have avail. for families with more medical info, what to expect (haha…like we know!) what to look for, etc. When they talk to you about it it seems like you are so overwhelmed you only hear 1/4 of waht they say.
If you’dl ike to help, or even if you’d just like to be friends online to chat about daily battles with HD…I’d appreciate it.
My son has alot of soiling issues and we battle diarreah almost daily, if his poop has any form to it we get so excited!
Look fwd to hearing from you!!
And congrats on the story—cant wait to see it!!

#13

I’d be happy to help. It is awesome that you are doing this. I wanted to let you know on another HD group I belong to a lady just wrote a book about HD. I have no idea what hers is about but she will be selling it soon and she is doing it to donate money to John’s Hospkins research. Also the pullthrunetwork has an awesome brochure on HD as well but I know the more the better to help spread the word about HD!

You know what we need is a children’s book. One that our kids can be read to to help explain their body…that is something I have yet to find. I have found a coloring book for children with a colostomy and it has a cute storyline.

Janel
mom to:
Isabella(13), & Tyler(5) Hirschsprung’s Disease (dx 1/08,pull-thru 5/08, ostomy closure 6/08), cecostomy(11/08)

#14

I too am going to write a book. my son was diagnosed as soon as he was born and had his first surgery when he was 2 days old. he has total colonic hd. the small amount of small intestine he does have doesn’t work well enough for him to absorb food. so he has been on tpn since he was 2 days old and he is now 16 months. he is on the transplant list for small and large intestine. we almost lost him over easter because he had 5 infections that he was supposed to survive. thankfully he did and is now on the list. so i thought i would write a book telling our story along with info on hd. i have yet to see anyone who has had as bad a situation as ours, which is good. hopefully when the few of us put out books future parents will be better off then we were.

jackie

#15

I um “found” our mystery dx episode on youtube. It is in 3 parts…just go to this site and click on each one to view starting with part1…hope you enjoy it. There are some light words across the screen (hopefully it won’t annoy you too much) it is still viewable. If I “find” a better copy I will let you know. http://www.youtube.com/colonkids
Janel
mom to:Isabella(13), & Tyler(5) Hirschsprung’s Disease (dx 1/08,pull-thru 5/08, ostomy closure 6/08), cecostomy(11/08)

#16

have just watched your story on you tube it was like watching our Conor all over again,we are so lucky that when he was rushed into hospital with septicemia and enterocolitis that his consultant knew exactly what he was looking for as our doctor like yours was treating him for constipation,Conor is only 17mths and his pull-thru 2 wks ago thank you for sharing your story with us and for all your help when he was diagnosed. Maureen G/mother to Conor