Where has Merri Been??

I know it has been FOREVER since I last wrote. My life has taken many twists and turns the last few months. I am newly employed! I am the new Executive Director for The Bridge @ Studeo 315 in Mishawaka. It is a new food pantry for our city. It is a partnership between the MAC food pantry, Stone Soup Community, & The Penn Township Trustee. I absolutely love what I do. God has brought me here to this place in my life and I am so thankful and feel so blessed. Just a quick update on Dyan Orr, my niece. she was on her local news this evening:

Portage Girl Battles Rare Disease

Reporter: Brock Bergey

We've all heard the saying--life is short. It's meaning, however, often gets overlooked. But, a Portage girl's story puts it all in perspective.

You wouldn't know it by looking at her, but Dyan Orr is battling a deadly disease.

"My right lung is almost gone and it's not working too good," she says.

Breathing is just one complication facing the fifth grader. Dyan suffers from a rare lymphatic disorder.

"It's lymphangiomatosis," says Mike Orr.

Dyan's father says the terminal condition affects the body's ability to fight off infection.

"It goes in and it sees a problem and it wants to take it over and destroy everything there including good things," says Mike.

He knows his days with his daughter are numbered. But, Dyan continues to prove she's a fighter. Doctors didn't expect her to live this long.

"We don't hide anything from her. We make her part of every decision that is made," Mike says.

At the young age of 10, Dyan says she's prepared to leave this world and enter the next.

"I get to meet my grandma and grandpa who I've never met before and some of my aunts and uncles and other family members," says Dyan.

Dyan's life will likely soon end, but research on her condition is far from over.
And, that's why, following her death, she wants doctors to use her body for further testing.

"They'll know more what happened because they'll do tests on me. They might know more," Dyan says.

Her parents take comfort in knowing Dyan will continue her helping ways after she's gone.

"I don't think I'll be ready. I mean that's my youngest daughter. My youngest child," Mike says.

Dyan is a strong believer in angels. Her dog is named Angel. A pair of angel wings hang in her room. Soon, she says she'll be an angel, herself, looking down on her family and friends from heaven.

"I think it's just like down here except full of clouds," says Dyan.

But until then, the Orr family is making the most of each day and raising awareness about a disease that gets little attention.

A foundation has been set up in Dyan's name. To donate or learn more about her illness, go to www.dyanmarieorr.com.

WAGING A LIVING

So I watched this documentary last night on PBS called "Waging A Living". It was very interesting. As many of you know, my primary goal in life is to help the poor. Watching this proved even more to me that it is going to take more than just the "government" to get people out of poverty. It is going to take me, you, the guy next door, our churches, our employers.....EVERYONE! Are you doing your part to help the needy? I know God has a plan for me, so far I am being obedient to Him. I am not sure how He is going to use me, but I love what He is using me for so far!! I can't wait to do more! But I need YOUR HELP TOO!!!! Let me know if you want to help me find a way to STAMP OUT POVERTY!

DYAN'S IN THE NEWS!!

Girl losing fight with rare disease
By Ann Marie Ames

Portage - Tonya Orr wishes her daughter had bone cancer or leukemia. Then, at least, doctors would know what to do to help Dyan Orr, 10, of Portage.
"There would be a protocol," Tonya said. "But they just don't know what to do for this.
"Tell us just one success story. Just one."
Dyan was diagnosed in March 2005 with lymphangiomatosis, a very rare disease of the lymph system, the system of glands and vessels that helps the body fight disease. While the cause is unknown, the disease causes non-cancerous growths to invade certain organs or body parts. The family has made more than a year's worth of hospital trips, even being turned away from St. Jude's Children's Research Hospital in Memphis, Tenn. Now the Orr family, with Dyan's input, has decided to take no more invasive measures, meaning she will have no surgeries to have any more tubes inserted into her chest and abdomen to drain the lymphatic fluid that continually builds up there. This week the family will meet with Hospice staff from UW Hospital, which will monitor and manage Dyan's pain medications and help keep the end of Dyan's life as comfortable as possible.
Dyan's doctors will not give the family a length of time they expect her to live. But the family has made funeral arrangements and has kept Dyan as informed as possible about her condition.
The fluid buildup in her chest cavity has left Dyan's heart weak, one lung the size of a fist and the other half full of invasive tissue.
"It's like the opposite of AIDS," explained Dyan's father, Mike Orr. "AIDS causes your immune system to stop working. This causes the immune system to attack the body."
As a result of the lymphangiomatosis, Dyan also suffers from Gorham's Disease, an extremely rare bone disorder that disrupts the way bones replenish themselves, causing a reduction in bone mass and leaving Dyan with osteoporosis like that of a 65-year-old woman.
Dyan's condition was diagnosed last March when staff at UW Children's Hospital drained about a gallon of lymphatic fluid out of her chest. She takes a variety of medications, including anti-vomiting, anti-nausea and pain medications.
The family had a scare two weeks ago during a Disney Cruise trip sponsored by the Make-A-Wish Foundation. While the ship was docked at the Florida Keys, Dyan stopped breathing and was rushed to the ship hospital. She was stabilized and allowed to continue her trip, where she enjoyed visiting a spa, touring the ship and watching live Disney performances.
Now that Dyan is home again, she intends to stay there.
"She doesn't want to be hospitalized again," Mike said. "That's one thing we know for certain."
In all of their research, the family has only found two other children in Wisconsin with lymphangiomatosis as pronounced as Dyan's. While Tonya knows doctors can do no more for her daughter, one of her greatest wishes is to see research done to help other children.
"We've been turned down by hospitals, news stations and celebrities that we've asked for backing on this," Tonya said. "We just want so much to get the word out there so that we can back other families and make people aware of this.
"It's so frustrating that no one, including doctors, knows anything about this disease."
Dyan said that using oxygen and a wheelchair often draws stares from strangers. When asked if there was one thing people should know about her disease, she replied: "Don't be scared if you get it, because there's no cure. There's nothing to be scared of."

aames@capitalnewspapers.com
745-3518

BACK FROM THEIR TRIP......

Well we are back from our trip. Dyan had a GREAT time. We did have a few bumps along the way but like always she came through it only as she could. The week was full of many smiles and laughter from her. She met so many great people that touched her life and she will always remember. She was able to meet all the disney cast and has lots of pics to look at. Gabby had a great time shopping in the many ports of call. She spent time in the teen rooms with new friends that she met. Mike and I enjoyed the time with the girls and watching them have the time of their lives. There was so much laughing and good times for them that it will last a life time for us as great memories. Being home is hard and knowing that we may not have much time left with Dyan, we are only hoping that she will stay strong and stay with us for a long time. Please keep praying for her. Love Tonya

UPDATE ON DYAN

Dyan went on Thursday for more tests, CT Scan, Echo, blood work. The echo was good no more fluid than the last one and her heart is doing real good. No word on the blood work yet. The CT wasn't so good. The fluid in her left lung is getting a lot worse, her right lung is becoming stiffer (dieing) and this is causing all the pain in her right side. It is also getting worse around her abdomen and it is in her throat now. It is squeezing on her esophagus this is why she is having trouble eating and why she is throwing up so much. They wanted her to stay in the hospital and have another tube put in to drain the fluid, but she said no and we agreed to that with her. They put her on a water pill to see if that will help, it is a long shot but we will try it. She is struggling with her breathing and is on her oxygen almost 24/7 now. We do have our date for the cruise it is going to be June 24th. we can't wait. Dyan has let us know that she is going to hang on until after the cruise but she is not sure how things will go after that. She is very strong about what she wants and we are supporting her in this. Thank you for all the great thoughts and prayers for her and us. Love Tonya Mike

PLEASE PRAY FOR DYAN!

It is 5:33 A.M. right now and I have been up for over an hour with Dyan. She is sleeping again but in pain. She asked me what the % was that she was going to die? I asked her what she thought and she said "oh about 99%" I asked her if she was scared "no why should I" I told her that she was very brave and that when it was time her angels would be with her to take her to heaven. She told me that she told them they have to wait until after her cruise then they can come and she will go and play in heaven with them. I will be talking with the Make A Wish today to get the dates for sure. We need some more prayers for her to get her to this cruise, so please ask God to give her this wish, this one last wish for my Dyan, then he can send her angels down for her. She goes in for a CT scan this Thursday to look at the two new growths that have formed at the bottom of her ribs. She still can't eat much without getting sick, but she does what she can and that is just that. I wish that all of you could see her for a day and see how strong she is and how excepting of what is going on. There are days that I don't know how she does it, but she gets through and as she always says "I'm fine". Know that she is fine and it is almost time for her to go. God bless all of you that think of her and pray for her, Thank you Love Tonya

HAPPY MOTHER'S DAY TRIBUTE TO MY MOM

This is a tribute for my Mom, Janet Lee Eldridge Orr Norton. My Mom was a remarkable woman. She lived through so much grief and heartache in her 58 years of life, but through it all, she still managed to love all 5 of her children unconditionally and to the best of her ability tried to give us the best life she could. My Mom was my best friend and I miss her every minute of every day of my life. I know she is looking down from Heaven smiling and just counting the minutes until she can see her kids face to face. The first thing I will ask her when I see her is...Mom, have I made you proud? I know I am the woman I am today mainly due to my Mother. Mom, I know that you will never read this, but I just want to say thank you for giving me life and loving me the way that you did. You were everything to me and I will do everything in my power to make you proud every day of the rest of my life. These Yellow Roses are for you! HAPPY MOTHER'S DAY! I LOVE YOU!