About + Why
About our Mito Warriors
Mid-February 2016, our daughter, Lorelei, was born seven weeks early. Unfortunately her timeliness wasn't the only surprise! Not even three pounds at birth -- this little girl has been defeating the odds from the very beginning. During her 77 days in the NICU we learned that Lorelei has a rare form of Mitochondrial Disease that was caused due to a mutation to her FBXL4 gene. We also learned that it is a 25% chance that any children we have will also have this disease. At the end of June 2019 our son Benjamin was born. Benji is also a mitochondrial disease warrior.
Since Lorelei's birth, our lives have been turned upside down. Prior to having a child you try to imagine your future. No one can ever be prepared for what we have faced and continue to face on a daily basis. We have learned to adapt and adjust to life's plot twists... one day at a time.
Due to the fact that Mitochondrial Disease affects the mitochondria of the cells (the energy producers), any type of stress on the kids' bodies can put them in dangerous situations. Lorelei and Benji cannot fight infections well. Something as simple as a common cold can be life threatening!
The kids visit the hospital, doctors and therapists more frequently than they visit family and friends. Developmentally, they are well behind other children their ages. Both are fed 100% with g-tubes. We firmly believe their feeding tubes are saving their lives. They both struggles from hypotonia (low muscle tone) that holds them back from typical milestones. Between the two of them, one or both have complications with their brains, hearts, kidneys, eyes, ears, metabolic function and more. We don't know if Lorelei or Benji will be able to speak, walk or even sit up on their own... but we are letting both children write their own stories.
Lorelei has a wonderful, sweet personality. She loves her Mommy and Daddy very much, almost as much as she loves her border collie Olivia. She likes music, looking at books, doing crafts and laying in her hammock. She is learning how to communicate with an ipad and we are so proud!
Benji may be sassier than his sister! He definitely lets people know when he is not thrilled. He loves mama cuddles and fluffy blankets. Sitting in his bouncer and playing with toys is his favorite thing!
At this time there is no cure for Mitochondrial Disease. More children's lives are cut short from Mito than childhood cancers. Please help us raise awareness and funds to help find a cure to Mitochondrial Disease.
Where do the funds go?
In 2013, Dr. Marni Falk and her staff of scientists at the Children's Hospital of Philadelphia, identified the gene that is causing Lorelei and Benjamin's form of Mitochondrial Disease. Now that Dr. Falk and her team have identified which gene is causing the disease, they are actively pursuing therapies to treat Mitochondrial Disease.
All of the proceeds from the Float for a Mito Cure go directly to Mito Research at CHOP. Please help us help the researchers find a cure to mitochondrial disease as they learn more about the FBXL4 gene.
Why a float?
In 2017 I decided that I wanted to put my professional event planning skills to good use and create a fundraiser for Mitochondrial Disease research. As I sat on the dock at the river, sipping a fun beverage, pondering a 5k fundraiser... I thought "I don't like to run. But I like to sit at the river and float..." And so it was born! That summer, on my birthday, 50+ people gathered to celebrate, float and raise awareness for Mitochondrial Disease with our first Float for a Mito Cure. The following year we added a silent auction and 100 more people. In 2019 the Float for a Mito Cure event continued to grow and we added a professional corn hole tournament! Last year we raised over $18,000 that went directly to mitochondrial disease research at CHOP.
This year, due to Covid-19, we cannot float together so we are adapting and adjusting, just like mito families do, and we will all virtually float together throughout the summer! Thank you for joining us!