Daisies for Maysie

For: Maysie Madison
Organizer: The Daisies for Maysie Campaign
of $10,000 goal.
Raised by 18 donors
8% Complete
This fundraiser is closed. Thank you for your support!

The Story

Maysie is a fifth grade student at Pine Knob Elementary.  She is spunky and has the brightest smile!  She loves to paint her nails, listen to Katy Perry and Justin Bieber and eat pizzaJ Maysie enjoys reading and writing and often plays teacher. Her aunt says “Maysie loves lip gloss and wearing high heels around the house” like a typical ten year old girl. She loves her two dogs, Chewie and Smokie and her favorite colors are pink and purple. 

On March 7, 2013, Maysie Madison was put into a medically induced coma because of continuous seizures causing damage to her brain.  The doctors have tried many things but are unfortunately perplexed.  They made the difficult decision to remove the right side of her brain hoping that this would stop her seizures and she could recover with therapy.  The devastating news came after the surgery that the seizures were continuing and were now affecting the left side of her brain; they had to put her back into a coma.  The doctors are continuing their efforts; however, some tests are not covered by Medicaid.  This is where we can help by raising awareness and providing financial support. If you recognize the symptoms or medical condition, please contact us with your information.   

Family, friends and her community are rallying around this special girl.  Your continued support and prayers are truly appreciated!   Her mother, Stephanie, has been by her side praying for her to be healed. No one can comfort a child as well as a parent can which is why we are raising funds to help ease the financial burden while she remains by Maysie’s side. The family has been overwhelmed by this. We are asking for your help as they are encountering mounting medical and household bills.  Please consider donating to The Maysie Madison Fund @ TCF Bank located at 6430 Dixie Highway in Clarkston, MI.  All donations big and small are greatly appreciated.  We would be honored for you to help!

Fundraiser Updates

Posted on May 24, 2013 by The Daisies for Maysie Campaign
First and foremost, Thank You! You just never can imagine what can happen when a whole lot of love comes together. I believe that Maysie felt everyones love from Clarkston all the way to her room at Children's Hospital! Tears of gratitude have fallen and tears of sadness that Maysie couldn't experience the events for herself. Every person that came to Mel's to support Maysie and her family are truly amazing people and we are truly blessed. The biggest Thank You to Cindy and Joe and all the staff at both Mel's, they have huge hearts and souls! Maysie has been having some respiratory issues this past week and continued prayer for her is always appreciated. There is a meeting next Monday or Tuesday with the respiratory team to discuss what needs to be done to make it easier for Maysie. The discharge planning meeting has been cancelled and has not been rescheduled at this time. With her moving back to a step down room (a room right next to the ICU) because of the care she has been needing and all the machines she is using to help expand her lungs, help her cough, open up her air way, loosen up the congestion and suction her lungs out, Stephanie is struggling to just keep her emotions together. Please send her your love and prayers. She is an amazing mom. She did have surgery yesterday to insert a g-tube into her stomach so she can get her meds and food and she seems to be doing just fine. I will keep you posted with new information as it comes, Thank you and God bless....Jenny

Posted on May 8, 2013 by The Daisies for Maysie Campaign
Our community will be supporting and celebrating Maysie in many wonderful ways in the coming months. We will keep you updated. Your continued prayers, positive energy and love mean so much to the family. Thank you

Posted on May 1, 2013 by The Daisies for Maysie Campaign
We want to express our appreciation for your generosity in support of Maysie.  You truly did a wonderful thing.  We can't thank you enough!

Posted on April 30, 2013 by The Daisies for Maysie Campaign
This is just a small update from Maysie's Aunt Jenny...I spoke with Stephanie today, we will be meeting with Maysie's team of doctors on Wednesday to discuss her case. They are still quite perplexed and there seems to be different opinions on how she is progressing. Some of her team feel that she is showing improvement and want to start lowering her coma meds, while others feel that the plasma transfusions are not doing what they expected and feel that the twitching she is still having needs to be stabilized with the increase of her coma meds. Obviously we want to go with the team that feels that the twitching is not something harmful to her and believe that she is improving with each treatment. Stephanie feels like the wind was knocked out of her sails yesterday, please continue to pray, pray, pray! We knew that Maysie was a unique little girl with her own special quirks, which we love dearly about her....but this is a bit much!:) Hopefully soon, we will have her special self back home. Thank you to everyone for their love, support and prayers. Stephanie has said to me "What words do I use to express my thanks and gratitude, how do I do that?" I told her to just say thank you....so from Stephanie "THANK YOU!"

Posted on April 26, 2013 by The Daisies for Maysie Campaign

Maysie Madison is a 5th grade student at Pine Knob Elementary here in Clarkston. She has been in the hospital since March with a serious medical issue. Maysie's family is extremely grateful for the many prayers, thoughts and love sent her way. As you can imagine, this is a very difficult time for them. If you want to help, continued prayers for Maysie and her family are truly appreciated. There is also a fund set up for Maysie to help with medical bills.
The Maysie Madison Fund
TCF Bank
6430 Dixie Highway
Clarkston, MI 48346
The love and support Clarkston and the surrounding communities have shown is amazing! Please continue to pray and send positive energy their way. I know so many of you have Maysie in your prayers and heart. While being respectful of their privacy, we will try to update you periodically on her progress.  Thank you!!

Posted on April 26, 2013 by The Daisies for Maysie Campaign

During the month of May, Pine Knob Elementary will be supporting and celebrating Maysie with the "Mondays for Maysie in May" fundraiser:) Students will be showing their support for Maysie in various ways that she would enjoy, like wearing pj's to school. PKE will be selling white chocolate daisy suckers...Daisies for Maysie:) Students will also have an opportunity to purchase pink bracelets to show their love and support. PKE will also have the opportunity to make a personal Daisy message to Maysie.  All proceeds will go to help with medical bills for Maysie via The Maysie Madison Fund at TCF Bank on Dixie Highway.
More to come.....
Thank you for your continued prayers, love, and support! 

Posted on April 25, 2013 by The Daisies for Maysie Campaign

Posted on April 25, 2013 by The Daisies for Maysie Campaign

Community pulls together to help family in crisis by Mary Keck

April 24, 2013 - 
Like many ten year olds, Maysie Jean Madison sings along with Katy Perry and Justin Beiber. She loves writing, bike riding, painting her nails, and Sponge Bob Square Pants. But since March 7 when Maysie was medically-induced into a coma due to seizures in her brain, she hasn't woken up to enjoy the usual things.

"It's like a bad nightmare," said William Madison of what he's experienced. He said he started a Facebook page called Wake Up Maysie Jean because he feels helpless. "I wanted to feel like I'm doing something," he said.

"It makes you pull things closer to you and appreciate the things you do have," said Emery. Something Maysie's family has been thankful for is all the support they've received. "Everyone's been pouring out so many good prayers and thoughts," she noted with gratitude.

""The community is just coming together and doing so much because they understand that there's going to be a ton of medical bills that are going to come from this," Emery said. Mel's Grill, where Maysie's mother works plans to hold a fundraiser. Maysie's school, Pine Knob Elementary, is dedicating the entire month of May to raising money for Maysie. They kicked off Mondays in May for Maysie at their talent show where they collected $257.

On the first Monday in May for Maysie, students at PKE who donate a dollar can wear pajamas to school. On the next Monday, they'll be selling white chocolate daisies for Maysie. They plan to sell sparkly pink bracelets too.

Anyone interested in donating can give to the Maysie Madison Fund at TCF bank or the Wake up Maysie Jean/Maysie Jean Fund at Clarkston State Bank. Check for updates on Wake Up Maysie Jean on Facebook. 
"Keep the prayers coming. That's the biggest thing," William Madison said.

When Maysie started having seizures, she was taken to the emergency room, but try as they might, her doctors were not been able to stop the seizures. They treated her with medications without success, and every test Maysie underwent didn't reveal a cause. Finally, to keep her from seizing, Maysie was put into a medically induced coma.

"She went from running around and being fine to all of the sudden, all of this, and nobody has any answers for it," Maysie's Aunt Jenny Emery summed up.

Once in the hospital, doctors used Electroencephalography (EEGs) to record brain activity and concluded that Maysie's seizures were occurring in her right, frontal and temporal lobes. They diagnosed her with Rasmussen's encephalitis and determined stopping the seizures would require brain surgery.

"They told us the only way she would live a seizure-free life would be to do a hemispherectomy and remove the whole right lobe," said William Madison, Maysie's father. So, the surgery was scheduled for March 17 at the Detroit Children's Hospital.

Maysie's doctors told her parents the outcome of her surgery would be no seizures, weakness on her left side in her hand and leg that would require physical therapy, but no major cognitive issues once her brain had time to recover and compensate. "But that's not what happened after the surgery," said Emery. 

As the medication to keep Maysie Jean in a coma was reduced after surgery, the seizures started again. This time, the left hemisphere of her brain was seizing. "That's when they put her back into the coma," Emery noted.

The results of the surgery revealed Maysie's seizures were not caused by Rasmussen's encephalitis. Although they've conducted numerous tests, doctors have not been able to pinpoint the illness causing Maysie's condition, which leaves them with little understanding of how to treat it.

"The doctors are not giving up. They are willing to try anything they can think of, but they are kind of stuck," said Emery.

One treatment has yielded some positive results. Since trying five intravenous plasmapheresis treatments, Maysie's EEGs have shown less seizure activity.

Over the past week, Maysie's doctors "started weaning her off the coma meds," Emery explained. Maysie's hand and face muscles twitched, and she opened her eyes and was able to follow movement with her eyes. "She has started to become more responsive," said Emery and added, "she can't come fully out of the coma because she's still experiencing seizures."

Maysie's father and aunt feel the Detroit Children's Hospital is the best place for Maysie, and she's getting the best possible care. Getting to the bottom of what's causing Maysie's seizures continues to be a challenge, though. Maysie's family has heard her condition described as rare and unique. "We've never seen this before," they say.

To solve the mystery of Maysie's illness, her doctor's continue to run tests, but even studying the cause of her seizures has presented problems.

"They sent out some cultures and blood samples to a lab, and the lab wouldn't do the testing because Medicaid wouldn't pay for it," said Emery. "That was frustrating."

But, it wasn't the last time doctor's were stalled when trying to find out what's wrong with Maysie. To narrow down the possible causes, they want to perform genetic testing on Maysie and her parents, but the tests are not covered by Medicaid and could cost almost $12,000.

"We don't know what's wrong and to not be able to have all the tests done that might possibly find out because insurance won't cover it, I think that's just awful," Emery stated.

Since Maysie's has been in the hospital her family has been through a lot. Maysie's mother, Stephanie, hasn't left her daughter's side and is staying at the Ronald McDonald House near the hospital.

Clarkston News reporter

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