Lorelei & Benjamin's Hope for a Mito Cure!
Thank you so much for your interest in Lorelei & Benjamin's Fund to Find a Cure for Mito. We hope that you will join us as we race against time to find effective medical and biochemical therapies to help our children, Lorelei & Benji - and other Mito Warriors. We believe that the best chance we have to help them is to focus our fundraising efforts to support Dr. Marni Falk's lab at the Children's Hospital of Philadelphia. One hundred percent of your contributions go to the Dr. Falk Lab at CHOP where they are studying mito and the FBXL4 gene mutation that our children have. Your donations are tax deductible.
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 defeated 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. Children like Lorelei and Benji cannot fight infections well. Something as simple as a common cold can be life threatening!
In July of 2021, Lorelei caught a common cold, Rhino Virus. At this point in her battle with Mitochondrial Disease her body was too weak to fight this cold that simply gives healthy people a case of the sniffles. On July 7, 2021 Lorelei gained her angel wings and is no longer in pain.
Our children visit(ed) the hospital, doctors and therapists more frequently than they visit family and friends. Developmentally, they are/were well behind other children their ages. Both are fed 100% with g-tubes. We firmly believe their feeding tubes have improved their quality of life and even given them more time. They both struggle from hypotonia (low muscle tone) that holds them back from typical milestones. Between the two of them, one or both have/had complications with their brains, hearts, kidneys, eyes, ears, metabolic function and more. With so many unknowns we don't know if Benji will be able to speak, walk or even sit up on his own. Lorelei was never able to do any of those, but was able to answer simple questions with an eye gaze communication computer. We are hopeful and continue to let both children write their own stories.
Lorelei had a wonderful, sweet personality. She loves her Mommy and Daddy very much, almost as much as she loves her border collie Olivia and golden doodle Jovie. She loved music, books, doing crafts and laying in her hammock. She is missed terribly but we also feel relief to know that she is no longer in pain.
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.
Dr. Falk's Lab
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.
Please help us as the lab attempts to learn more about the FBXL4 gene and what can be done to counter the effects of the gene's mutation.