Marirose's Race to Recovery
Donation protected
Hi All,
First things first, thank you for taking the time to stop in and learn about the significant story of Marirose (AKA the rarest rose). We encourage you to take the time to understand what and who you will be donating towards before doing so... so let us explain!
In early October of 2014 Marirose began having flu-like symptoms that swiftly turned into seizures. She was brought to Cape Cod Hospital where it was quickly decided she needed the level of care that could only be provided at Massachusetts General Hospital. After arriving at Mass. General, just a couple days after the initial symptoms, a roller coaster of Marirose's health status ensued. Marirose suffered through innumerable seizures that were especially difficult to quell due to her allergic reaction to the medications. At times Marirose's memory faltered and she was unable to recall her recent past or even recognize her loved ones. Nonetheless, Mary very much remained Mary; the giggling, 'punny', brave and loving girl she is.
Marirose's experience at Mass General was not textbook in any terms, teams at both Mass. General and Brigham and Women's Hospital tirelessly researched Mary's case in hopes of providing a diagnosis. After a period of over two weeks in the ICU it was decided that Mary would be put into a medically induced coma. In this, it was hoped her seizures would be controlled and eventually she would be brought out of this coma with signs of recovery. Around this time it was decided the likely diagnosis was NORSE (New-Onset Refractory Status Epilepticus) which is categorized as a rare disorder per the National Organization for Rare Disorders and the National Institute of Health. To be clear, Mary's family was informed by her medical team that they only see cases such as hers every 10-15 years.
On October 24th, 2014 Mary was slowly but surely brought out of this coma and, unbelievably, good news was just around the corner. In the following days Mary was chatting, remembering her past, and yes- making puns! Through tears doctors and nurses, family and friends spoke of Mary's recovery- her medical team insisted it was the most miraculous recovery they have seen in 25 years. From here Mary continued to improve, she was brought out of the ICU and her friends were finally able to visit. Mary's recovery is not over, but she is in recovery and that's what matters.
Mary was discharged from Mass. General after a total of 1 month with a diagnosis of both NMDA encephalitis and NORSE. Currently she is on the road to recovery involving several necessary therapies including physical and speech. Mary's speech is perfect but speech therapy helps with memories, and sadly many of Mary's precious memories from the last few years are currently lost from the disease she has so valiantly battled. Some of the medications to keep the seizures from happening also keep those memories away. These forgotten memories include her time in Korea teaching 4 and 5 year olds in an immersion program and saving her earnings the entire time for a trip through Southeast Asia, India and Australia. Yet, her adventurous spirit now embraces her recovery as she fills her days learning of nutritional therapy to not only help herself but to help others. And although seizures have still occurred since her discharge, as a result of her brain having gone through such trauma, Marirose cannot be categorized as anything else but brave, beautiful, strong...we could go on. Your donations will go towards assisting in Marirose's recovery in terms of lifting the burden of medical bills from Mary and her amazing family.
Several of us will be running a Half-Marathon in honor of Mary and these donations. It is called the Boston Run to Remember (but we prefer to think of it as Marirose’s Race to Recovery) and it is taking place on Sunday, May 24th 2015. The race starts at 7:00 am in the Boston Seaport area. Your donations in honor of Marirose will be our motivation in this run. We are hoping to reach our goal by this date.
First things first, thank you for taking the time to stop in and learn about the significant story of Marirose (AKA the rarest rose). We encourage you to take the time to understand what and who you will be donating towards before doing so... so let us explain!
In early October of 2014 Marirose began having flu-like symptoms that swiftly turned into seizures. She was brought to Cape Cod Hospital where it was quickly decided she needed the level of care that could only be provided at Massachusetts General Hospital. After arriving at Mass. General, just a couple days after the initial symptoms, a roller coaster of Marirose's health status ensued. Marirose suffered through innumerable seizures that were especially difficult to quell due to her allergic reaction to the medications. At times Marirose's memory faltered and she was unable to recall her recent past or even recognize her loved ones. Nonetheless, Mary very much remained Mary; the giggling, 'punny', brave and loving girl she is.
Marirose's experience at Mass General was not textbook in any terms, teams at both Mass. General and Brigham and Women's Hospital tirelessly researched Mary's case in hopes of providing a diagnosis. After a period of over two weeks in the ICU it was decided that Mary would be put into a medically induced coma. In this, it was hoped her seizures would be controlled and eventually she would be brought out of this coma with signs of recovery. Around this time it was decided the likely diagnosis was NORSE (New-Onset Refractory Status Epilepticus) which is categorized as a rare disorder per the National Organization for Rare Disorders and the National Institute of Health. To be clear, Mary's family was informed by her medical team that they only see cases such as hers every 10-15 years.
On October 24th, 2014 Mary was slowly but surely brought out of this coma and, unbelievably, good news was just around the corner. In the following days Mary was chatting, remembering her past, and yes- making puns! Through tears doctors and nurses, family and friends spoke of Mary's recovery- her medical team insisted it was the most miraculous recovery they have seen in 25 years. From here Mary continued to improve, she was brought out of the ICU and her friends were finally able to visit. Mary's recovery is not over, but she is in recovery and that's what matters.
Mary was discharged from Mass. General after a total of 1 month with a diagnosis of both NMDA encephalitis and NORSE. Currently she is on the road to recovery involving several necessary therapies including physical and speech. Mary's speech is perfect but speech therapy helps with memories, and sadly many of Mary's precious memories from the last few years are currently lost from the disease she has so valiantly battled. Some of the medications to keep the seizures from happening also keep those memories away. These forgotten memories include her time in Korea teaching 4 and 5 year olds in an immersion program and saving her earnings the entire time for a trip through Southeast Asia, India and Australia. Yet, her adventurous spirit now embraces her recovery as she fills her days learning of nutritional therapy to not only help herself but to help others. And although seizures have still occurred since her discharge, as a result of her brain having gone through such trauma, Marirose cannot be categorized as anything else but brave, beautiful, strong...we could go on. Your donations will go towards assisting in Marirose's recovery in terms of lifting the burden of medical bills from Mary and her amazing family.
Several of us will be running a Half-Marathon in honor of Mary and these donations. It is called the Boston Run to Remember (but we prefer to think of it as Marirose’s Race to Recovery) and it is taking place on Sunday, May 24th 2015. The race starts at 7:00 am in the Boston Seaport area. Your donations in honor of Marirose will be our motivation in this run. We are hoping to reach our goal by this date.
Organizer and beneficiary
Maddie Line
Organizer
Boston, MA
Marirose Lynch
Beneficiary
