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Daughter In The Newspaper


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#1 hjkmatthews

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Posted 19 August 2004 - 12:49 PM

Hey everyone! I just wanted to say hello, I hope everybody is doing well. I wanted to also share with you the newspaper article that the Flower Mound Leader did on my daughter (Kylie for those of you who don't know us). This is a local paper here in Texas, and I am really happy they took the time to listen to our story and wanted to publish it. You can simply go to the website, and scroll down to the article titled, "Sick toddler raises awareness of disease". Hope you enjoy!

Flower Mound Leader
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#2 Canadian Karen

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Posted 19 August 2004 - 01:33 PM

Oh my goodness, what an ordeal your family has been through!!!

I am so happy Kylie is on the road to recovery with the gluten free diet. I can't imagine how I would survive knowing I had a medical bill like that over my head..... especially when it should be the last thing you have to worry about. It is not fair that you would have to worry about that when you should be concentrating 100% on your daughter.....

Makes me remind myself that I am thankful for Canada's health care system, even though it has its faults of its own!!!

My prayers are with you that this is the end of your ordeal and she is now healthy, strong, lively and thriving......

Hugs from Canada,
Karen
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positive bloodwork, positive biopsy
Celiac, collagenous colitis, hypothyroidism
endometriosis (at age 20)
spinal stenosis (early 20's)

Biopsy August 2006 confirmed complete villous atrophy despite being gluten-free for years and bloodwork within range showing compliance with diet. Doctor has confirmed diagnosis of Refractory Celiac Sprue.
Endoscopy also showed numerous stomach ulcers, have started taking Losec.

Mother to Eileen 13 yrs
Rhiannon 8 yrs
Daniel & Connor 6 yr twin boys......

"Joyfulness keeps the heart and face young. A good laugh makes us better friends with ourselves and everybody around us."
Orison Swett Marden


Laughter is the shortest distance between two people.
-- Victor Borge



"An optimist laughs to forget. A pessimist forgets to laugh."
Tom Nansbury


"Doctor to patient: I have good news and bad news. The good news is that you are not a hypochondriac."
Unknown

#3 flagbabyds

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Posted 19 August 2004 - 02:08 PM

This is something my mom wrote a long time ago that was publeshed in the San Jose Mercury News in 1998 about when I was sick.
[QUOTE]seven years ago, a family discovered firsthand the most precious gift of all
By Debbie Duncan
For years I had seen reports on the evening news of the Doobie Brothers' annual concert at Children's Hospital at Stanford. While the hospital is no more than two miles from my home, I always thought of it as a world away from my life and experiences. I had chlidren -three in fact- but they were all healthy. Until 1991.In mid-November my third child, 17-month-old Molly, stopped walking, talking, eating, playing, smiling, living. My husband, Bill, and I knew something was wrong, but we didn't know what. Neither did the doctors. Molly's helth was slipping away day by day.
Finally, in the middle of December, we decided to have her admitted to the new Lucille Salter Children's Hospital at Stanford for two days of round-the-clock tests. It was indeed a different world. In the playroom on the first day I met a mom and her 2-year-old; the little girl had just had a brain tumor removed.
The hospital hallways were wide, which was helpful because of all the IV poles and wheelchairs rolling from place to place. Molly had an MRI at midnight down the hall at Stanford Hospital. When she wasn't sedated for a test she cried for me to hold her. I tried to write Christmas cards because they had to be done, but I made little progress.
Our older daughters visited in the evening and worked on art projects with voluenteers. The girls didn't finish the tile they had been given to decorate, so I etched their names - Jennifer, Allison, and Molly - Into the clay after Molly feel asleep in her big hospital crib. The next day she was examined by more physicians and equiptment. In the afternoon a cheerful voluenteer came to our room to tell me about a special event, the Doobie Brothers' Christmas concert. "Would Molly like to go?" she asked. "She's just a baby," I replied. "But we don't have our next consultation until 6 o'clock." "Then come," the voluenteer said encourangingly, "it starts in about 15 minutes."
I met my new friend, the mother of the child who had had the brain tumor, in the hall. The toddler was sitting up in a stroller, her head wrapped in bandages. Molly slumped over me shoulder as I carried her downstairs.
"Oh good," the voulenteer told us when we arrived in the cafeteria. We saved the front row for infants and toddlers." They seated me about 10 feet away from the band. Other patients and their families surrounded us on three sides - kids attached to bags and poles, kids who had lost their hair from chemotherapy
A BLURRED PICTURE
The TV cameras were also wedged into the front of the crowd. When the Doobies started to sing "Oh-oh-oh, listed to the music," I suddenly thought, I don't beling in this picture. I'm supposed to be home watching the story on the news, not sitting here wiht a desperately ill baby who can't lift her head (The girl in teh stroller next to us was up and smiling.)
At that moment I knew Molly was really, truly sick. I felt tears welling up in my eyes, and I could also feel the cameras zooming in on me. I knew the cameramen were thinking, what a good shot. Soon tears were streaming down my cheeks.
We stayed in the front row thorughout the concert. I even managed to smile when I saw the band members use word sheets to lead the Christmas carol sing-along. At 6 o'clock Molly and I were back in our room with her sisters and dad, waiting for the doctor'r report. Bill turned on the news. The attending physician arrrived with "inconclusive" results. While I was talking with him in the doorway, 4-year-old Allison cried, "Mom, you're on TV!"
"WOW, mom," 6-year-old Jennifer chimed in, "you're famous."
I squeezed my eyes shut so my daughters couldn't see the tears. I didn't want to be famous. I wanted to be home and have my baby healthy again.
DIAGNOSIS
That Christmas Molly and I were home, but she was far from healthy. Christmas was a blur to me; picturtes of her show a wan, sad baby looking out from my arms with big, vacant eyes. Eight weeks and two hospitalications later, the diagnosis was finally made: Molly had Celiac Disease, or intolerance for the gluten in wheat, oats, barley and rye. She had been slowly starving to death.
Within a week of starting her new diet, Molly was actually smiling. Physical therapists taught her to walk and play again. We celebrated Christmas after coming home from the hospital the last time. It was the end of February.
Molly is 8 1/2 now. She follows a strict gluten-free diet, but other than that she's a normal, happy, healthy third grader. This month we decided to buy Packard Children's Hospital Christmas cards. Molly wanted to go with me to the gift shop. She punched the "UP" button on the elevator from the garage, and ran to the hospital entrance to jump on the spot that opens the aw=utomatic doors. (Molly rarely walks these days: she runs, bounces, or jumps everywhere she goes.) She made a dash for the tile-covered pillars. "There's our tile, mom," she pointed out. "With out names on it - up at the top."
Once again I felt tears filling my eyes there were no television cameras to record the event; this moment was private. Still, I could almost hear the Doobie Brothers singing for us. I reached for Molly's hand, and we strolled into the gift shop to select our family's Christmas cards.
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Molly

#4 celiac3270

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Posted 19 August 2004 - 02:21 PM

It's great that your story is getting out.......I've heard numerous cases on the boards about people's stories getting published in local newspapers. Congratulations. That is quite a story. This is how we're going to educate people about the disease.
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#5 flagbabyds

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Posted 19 August 2004 - 02:45 PM

That's an awesome story, sounds a lot like mine which I posted above
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#6 hjkmatthews

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Posted 19 August 2004 - 03:33 PM

Molly,
As if my story doesn't make me cry enough!!!I am so glad that you were finally diagnosed and I am so glad that your mother must be as relieved and grateful as I am to have a healthy child. Thanks so much for sharing your story!
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#7 flagbabyds

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Posted 19 August 2004 - 03:37 PM

She also wrote a book, "When Molly Was in the Hospital, A book for brothers and sisters of hospitalized children" It's not in bookstores anymore but you can get it on Amazon, byt Debbie Duncan
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#8 faithladene

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Posted 20 September 2004 - 08:58 AM

Thanks everyone.

This insidious disease is much more common than people want to believe. My partner died in July, having Celiac Disease and Herpetiformis. His family still doesn't believe Celiac is life threatening. His having to stay away from gluten was a joke with them.

While I was cleaning up his hospital room, he was transported home. When I got home, his family had, already, bought beer, and gave it to him. Yes, he was sick with liver disease and complications from pain medication, but, how could they give him beer?????????? he did pass away 5 days later.

No amount of discussion helped. They said he was going to die anyway and encouraged him to drink beer.

Perhaps, if, articles like these had been printed in our area, they might have listened to me better.

I will save this article, because, his daughter, soon to be married, may have a child someday, who could be at risk.

Sometimes, I think of not coming to this site anymore, because it doesn't involve me, anymore. But, you know, it does involve all of us. I have come to the conclusion that I need to keep abreast of what's going on. Someday, I may be able to help someone with my information.

Thanks Celiac Message Board for helping vent and grieve.

Faith
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