Well the holidays are right around the corner and again it is so hard to think about going through it again without Dyan. We are greatful to all our family and friends that have been there for us.  We are still praying for that cure and hope that it happens soon. Our hearts go out to all the other families that are going through this.  We pray for you all every day. May God bless you and be with you all during this holiday season and every day.  Mike and Tonya

Hello everyone, we as you can see have made some changes to the site and we hope that you enjoy it and pass it on to everyone you know.  We really want to keep Dyan's dream alive and find that cure so please pass this on and ask that it keep being passed on. We know that everyone has done so much and we can't thank you enough but the fight is not over. We are doing good and getting our lives on track.  With the holidays comming up soon we just want everyone to not forget about Dyan.  Thank you and God Bless   Tonya & Mike

WOW a lot has changed in the last almost nine months since we lost Dyan.  We are living back in Burlington so that we can be closer to her.  It has been a hard nine months but we deal with each day as it comes.  We are working on making some changes to the site so keep checking for those.  We are still asking for support for her foundation to help find a cure, we are not giving up with that.  We are real sure that we are going to be able to have a both at the Chocolate Fest, we will let you know here on the site so check for that.  Well for now please keep asking for people to go to the site and read about our angel.  Love Tonya

It has been four months now since we lost our angel and the pain doesn't seem to go away, it is easier to get through a day but it still hurts.  The holidays coming up are going to be so hard, but we will make it through.  We want everyone to know that we have kept our promise to Dyan to keep fighting to help find a cure. We have opened a store in Portage to help raise money for her foundation. It is slow right now but hoping with the holidays it will pick up some and we will raise some money.  We are still asking that if you can or would do some kind of fundraiser to help or ask someone you know if they would donate, put out fudraiser buckets at your work anything.  We do want to thank those who have kept up the fight and still are, especially Hank and Linda and Kids, you have helped keep us going, Thank you.  I am also going to be going to a crafting lession to learn some new things to make to have in the store, my lession is being given to me by Christy Nelson (Tom Nelsons) wife.  It will be a lot of fun. I know so many of you have helped in the past but we can't stop just because she isn't here anymore.  We need to help find a cure so please anyway you can think of or passing this on to others also we just can't give up.  Love Tonya        

   Well it is three weeks since she has passed and we miss her so much.  We want to thank everyone that has given to her foundation, but we are so far away from being done. Please pass the word on about her and what it means to all the children out there suffering.  We need to do a lot more fundraising and getting the word out.  We made a promise and we don't want to let her down, but we need HELP so please if you can keep passing her web page on and telling others about her and her fight.  We know that she is watching over all of us and is with us everyday, but it doesn't help make the pain of  not having her any easier.  Again thank you to all that have helped in so many ways, we love you all.  Mike and Tonya        

http://www.wiscnews.com/pdr/

http://www.nbc15.com/

http://www.wndu.com/

Are the following places you may see video and pics of our sweet Dyan who lives with our Father in Heaven.

Thank you friends and family for being there for us. I will feel the loss the rest of my live, but she lives in my heart. For her we need to continue to find a cure. For Kelsey we need to find a cure. For Luka and Marcus and all the others taken from us we need to find a cure. I will continue by running for State Assmebly District 42 up here and have the State of Wisconsin hear from her own words that a cure needs to be found. This is a painfull and terrible disease and the kids suffer so much. Please do what you can. We have ask this before and will keep asking. Our God in Heaven placed Dyan on this earth to bring this message to you. I know she touch all of you in special ways. You ask what can I do. have a garage sale and give half to The Dyan Orr Foundation. When the people come who have not been touched by Dyan tell them about her and asked them to do the same. Talk with your churchs and Employers ask them to help. We still have Kelsey who needs your help so much.............God Bless and keep you. God's people serving!

Mike

I love You my angel

 

It has been 3 days and We know Dyan is with our father in heaven, but it's hard. We want her back. We miss her. The other night was the first time in over 11 years we came home and there was no DB. The support all have given has been so great. The tributes on WNDU.com and NBC15.com were awsome. Thank You Jeff, Angelo and Brock. The flowers that have been sent, Thank You Brady Quinn, Gena and all others. The phone call yesterday from US Congresswoman Tammy Baldwin so so nice she could take time when our country needs her help. We have revieved hundreds of emails and calls. But we still want her back................I miss you DB and love you much much  your Daddy

     It is with the heaviest heart to let you all know that today July 11, 2007 at around 2:30 PM Dyan passed away. She went peaceful thank to the doctors and nurses at UW.  All the support that you have given us has ment so much and words can't thank you enough. We promised Dyan that we would not give up the fight to find a cure so please keep telling others about her and this site and we are keeping open her foundation to keep raising money.  For now God Bless you all.  Mike and Tonya Orr

Dyan is struggling. Her oxygen levels have dropped to 60 and she is losing bowel functions...This time the Doctors have witnessed what she is going through. We will keep you updated with changes...Pray for Peace and Pain Free

Mike

Today we admitted Dyan into University of Wisconsin Children's Hospital room 430 to get her pain under control. They put a PIC line in so the meds can be through the veins. She has been no stop throwing up since last night 6:00pm. She is doing real bad. Keep the prayers going................

Mike and Tonya

Tonight I got call from a very close friend in Holland, his little boy Luca has the same thing as Dyan and has been fighting for his life for over two years also.  Saddly he passed away yesterday.  I am not sure how I feel right now, knowing that Dyan doesn't have long.  It is some what a comfort to know that she will have a very special friend in Hevean to play with.  Please keep Luca's family in your prayers. 

Dyan is in a lot of pain and we talked to her doctor tonight and she has increased her medications again to try and get the pain under control.  I did tell Dyan about Luca and she is sad, but knows that he is waiting for her to play. 

These children need our help so bad to get the word out about these diseases so that we can find a cure.  Please if you can keep emailing this site to everyone that you know to help.  The funding is needed also for the research. We are selves have had a simple garage sale for the last two weeks, with donations from other families in the area and family and have raised over $2000.00 for the foundation.  It is as simple as that. Please we are asking and begging for help to fund research at the UW of Madison Childrens Hospital.  Anything will help.

                                                                                            God Bless, Tonya

Our hearts break for Luka's family. Jesus was there to meet him in heaven. Tonya is taking the news very hard and my love for her is hers. Please do what you can the diseases are killing our kids.....

Mike

 

What a bad day/night Dyan had. She lost all control of her Bowel functions and dropped on the floor. She was looking forward to watching the fireworks but couldn't even get to the window to watch. Her energy is totally zapped and the pain is increasing with the breathing problems. We will keep you all posted as the next couple days go.

Mike

This was sent to us by Brock Bergy News anchor NBC15 out of Madison, WI. I thought i would share this with everyone. Thank You to the author.   

Hi Mike, I received the following poem in the mail yesterday from a viewer.  He was extremely moved by Dyan's story and he put his feelings into words.  He didn't leave a return address and I don't know his last name.  It from a man who simply identifies himself as Carl. I wanted to share it with you and your family... "There is a little girl name Dyan offering all she has to give. So unselfishly this child so young, so that others may have a chance to live. When I heard what she had to say, the tears just filled my eyes.  How can one so young, be so strong and unafraid to die? She looked just like a little angel laying in that hospital bed, and I felt so unworthy after having heard what she said. I'll not be here much longer to grow up in this world, but I've known the love of my mom and dad, they say I'm a special little girl. They say I'll be rewarded for the gifts that I have given, but I do want to keep my eyes to see the beauty that is heaven." How great is that?  Please let Dyan know she continues to touch so many people. Hope things are well as can be. -- Brock Bergey Anchor/Reporter NBC 15 News Today is still the same. Dyan not out of bed and very ill. We are trying to comfort her spirit and love her. Mike

Dyan has not been out of bed since Tuesday. Her breathing continues to be very irratic and she has been convulsing. We talked to her about not being afraid anymore. She said she was scared when she goes she wouldn't have a mommy or daddy anymore. We told her that we will aways be her mommy and daddy and it is OK to go to sleep and wake up in heaven and we would be there soon. She said Mike would be there first. We need to get more exposure to help the people who have this disease and the University of Wisconsin conduct the research when she passes. We signed the papers this week along with Dyan to make sure this happens. Please write, email or call people to get awareness. We keep emailing TV and newspapers to get the word out. We received a response from Brian Williams of NBC Nightly news Friday so we are hoping it goes national. It is hard for us to ask for help, but if Dyan can donate her body for research, then we don't think it is much for us to ask. If you have a friend that is famous ask them to get involved. Mike is going to run for State Assembly District 42 next year to help the health care causes he believes in and bring state awareness for catastofic diseases. Write the Governor of Wisconsin Jim Doyle and tell him he should dedecate a day for Dyan in this state due to her sacrafice......God Bless and pray for peace and pain free.

Mike and Tonya

     Dyan is not doing to good.  Her breathing is getting harder and she is in lots of pain.  She sleeps most of the time and this is good because the pain is to much for her to deal with.  We have increased her medication again to try and help.  When she is awake she will eat alittle something but not much, like some fruit or a cup of pudding.  We did a fundraiser for her last weekend here at the house, we had a garage sale and raised over $4oo and we are going to do another one this next weekend too.  There is also another fund raiser starting by a family member and you can contact her by email to get all the details. She is going to have Purple with white poke a dot, mens ties and womans neck scarfs.  We would really like to sell a lot of these for Dyan and remember all the money raised will go to her foundation for research at the UW. Dyan needs your help, she is going to do her part when she leaves us, please help her.  Again you can email Linda for more details she is organizing this....star152@wi.rr.com      God Bless all of you.   Tonya

Dyan is holding her own still. Her breathing is very shallow. 2 days in a row she has wanted to get up around 9 oam. It's nice to see her up even though she is in extreme pain. We are still praying for peace with her and to be pain free. Today, tommorrow and Sat. we are having a rummage sale to benefit her The Dyan Orr foundation. We also emailed the following for support, LA Times, NY Times, Bill Gates foundation and the Ara Parseghian Medical Research Foundation. When you have time visit Dyan's friend Hannah at her foundation www.hannahandfriends.org. This is an extremely good cause along with Ara's. We all do what we can in these trying times. I wanted to thank some people who are helping:

Grandma and Grandpa Webster for coming last month to help, Brock and Angelo for the broadcasts and everything else they are doing, Brady and Charlie for the gift of happiness for Dyan, Grandma and Grandpa Dawley for there continual support and coming up everytime we need them and all the friends and family who are by are side through these trying times.

God Bless...Pray for Dyan,peace and pain free

Mike

  Dyan didn't have a good night. She woke up at 9pm and was having a lot of chest pain, feeling like something was stabbing her. It took awhile to calm her down and go back to sleep. Today is fathers day and Mike got a very nice gift Dyan is wide awake and it is 7am and spending some time with him. She hasn't been up this early in months.  We want to Thank everyone for all the nice things written in the guest book to Dyan she really enjoys hearing what everyone has to say.  She is very pround of herself for getting the word out about what she has and is hoping that people will help.  Now that the word is getting out she would really like to see her foundation grow so that she can give a big amount to UW for the research.  Her thought was can you do fundraisers where you live?  please consider this for her, Thank you again for all the great thoughts and prayers. God Bless all of you. Tonya

As we keep going so is Dyan. She is in so much pain and discomfort. The Doctors and Nurse are doing the best they can to controll it. We keep praying for peace and her to be pain free. I am watching her right now struggling to breathe with the O2 as high as it can go, it is tough for me not to feel sadness for my little girl going through what she is going through. She is the toughest person I have ever known with the biggest heart. She was rewarded with another special call today from the Notre Dame head football coach Charlie Weis. He like Brady brought a huge smile to her face. Tonya told me that she wanted to know from Coach Weis how his daughter Hannah was. She to is a special child like Dyan with a heart of gold. Coach Weis was touched by her concern. WNDU-NBC out of South Bend, In ran multiple stories this week on Dyan. You can view these stories and comment on them at www.wndu.com They may start with Brady's special call or a fathers wish. Please watch and read them it was truely awsome of them to do this. Tonight NBC15 out of Madison, Wi ran another story on Dyan and it can be viewed at www.nbc15.com Many thanks to all who put forth the efforts to help Dyan. Brady, Coach Weis, Jeff, Angelo, the entire WNDU staff, Brian from Notre Dame, The Cleveland Browns, Amy, All of our friends at the Portage Daily Register, Jen, The entire staff at NBC15, best of all Brock for keeping Dyan's story alive. I was informed by WNDU that the NFL network will be doing a piece on Brady and Dyan and giving it nationwide coverage. Ther are so many people we are proud to have help Dyan spread the word. Are hearts go out to Luka and his family you are in our thought and prayers.

God Bless to all,

Mike

Dyan is doing ok today.  She has been having a lot of chest pain the last couple of days.  We are having to give her a combination of meds to keep her comfortable.  She sleeps all day and has been for a few hours in the evening.  She is eating some but not much.  Her nurse was here today and said that her blood presure is a bit lower than it has been.  She said that it is slowly going down, it was 90/60 for a few days today it was 88/54.  She said when it gets into the 60's then we need to worry more about it.  We never know what to expect from her from day to day and it is hard at times to know what to do.  We have to just do what we think is best and hope it is the right thing.  Thank you for your prayers.  Tonya

  Dyan is not doing to good these last few days.  She has been awake more but the pain is getting worse.  She is complaining of her heart hurting more and her blood presure is not good.  She is having trouble breathing or catching her breath more than before, even on her machine.  We are not sure if the part that is around her heart is getting worse or not the only way to know is to have an echo done and she doesn't want to do this.  We are taking one day at a time and do the best that we can to keep comfortable.  Prayers for pain free are needed for her.  Thank you so much and God Bless, Tonya     

    Well Dyan is doing it again, keeping us on our rollercoaster.  She has been up more these last couple of days, eating and drinking and playing as if nothing is going on.  She is still having pain and it is hard for her to breath, but she is determind to keep us on our toes.  Her nurse said that all her vitals are the same as they have been since she was sleeping all the time the only differance is that she is awake.  She can't tell us why she is doing this, it is just what she is doing.  Her nurse said just take one day at a time and see what she does.  We don't want to give false hope with this because we know that at any time things can change.  We are enjoying our time with her while she is awake and it is nice to talk to her and hear her laugh.  Please keep up the prayers for her to be pain free.  God Bless all of you.  Tonya

     Dyan is still sleeping alot and not eating or drinking much.  She is still taking lots of pain medication to help with the pain.  She seems to be comfortable most of the time.  Today however she had one of her lasts wishes come true.  As most of you know that she is a huge ND fan and her favorit player is and always be Brady Quinn.  Well a huge thank you needs to go out to Brock at NBC 15 news for setting this up and making her wish come true.  Brady called Dyan today and talked to her on the phone.  Dyan couldn't believe it and cried so hard when she got off the phone that she couldn't talk .  She fell asleep with a smile on her face and it hasn't left yet, I think she is  dreaming about him. Mike and I can't thank Broc, Brady and the CL Brown staff for setting this up and making this happen for Dyan.  It means so much to us and there isn't anything we could say or do to thank you all enough.  To see her smile and be so happy as she was today ment so much, there just isn't any words to discribe what it ment.  Again thank you from the bottom of our hearts  Love Tonya 

Dyan had a good day yesterday with her Uncle Gig, Aunt Jilann, Dallas and Jordan. We celebrated Dallas's 16th birthday. Since then it hasn't been good. She can't swallow her pain meds. We have liquid pain medicine that we are giving her at an excellerated rate. Her breathing is very shallow. Last night her heart rate went from 136 bpm to 84 in seconds. She is hanging in there though. What a toughy she is. We continue to pray for peace and pain free. Tonya and I are both numb and going through the motions. It's hard on us and we know it's hard on all of you who care. God bless and keep all of you.

Mike

 This week Dyan is holding on. She is very strong willed and tough. Her pain level is high and we do what we can to help this. She spends long hours days in bed basicly out of it except when we force feed her meds to her. We keep praying for her to find peace and be pain free. Sunday and Monday were real rough for her but she is hanging in there. I want to thank Brock Bergy for the great story on Dyan that was broadcast on Monday in Madison and to Fox out of Milwaukee for picking it up and broadcasting to that area. If you missed it you can go to www.nbc15.com and put in keyword Dyan. You will be able to see both reports done by Brock. I spent allot of time emailing national news outlets to pick up her story but I have had no reponse yet. Dyan is an insperation to all and I think her story should be National. With all the negative news we need as a nation something to kick start good feelings and true american spirit like Dyan has. My only wish is that Dyan could meet her favorite person and football player before she goes, Brady Quinn the former Notre Dame quarterback. I think this would make her last wishes complete. I also emailed Governor Doyle asking him to honor Dyan. I don't know if my email is enough to get this done. Dyan's Uncle Gig and family, Jilann (wife) Dallas and Jordon are coming to see her Sunday. Love God's Grace and Peace to all.

Mike