Thank you so much for your interest in Lorelei'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 daughter, Lorelei - and other Mito Warriors. We believe that the best chance we have to help Lorelei 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 and are tax deductible.
Here's Our Story.
On February 16, 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 type of Mitochondrial Disease that has was caused due to a mutation to her FBXL4 gene.
Since mid-February 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. Lorelei visits the hospital, doctors and therapies more frequently than she visits her family and friends. Developmentally, she is well behind where she should be. She is fed 100% with g-tube, that we firmly believe is saving her life. She struggles from hypotonia (low muscle tone) that has held her back from typical milestones. We don't know if Lorelei will be able to speak, walk or even sit up on her own... but we are letting her write her own story.
Since Mitochondrial Disease affects the mitochondria of the cells (the energy producers), any type of stress on Lorelei's body can put her in a dangerous situation. Lorelei cannot fight infections well. Sometime as simple as a common cold could be life threatening!
Lorelei has a wonderful 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 and playing with toys that light up or play music. Other hobbies include playing with her hair, trying to lick the dog and sleeping.
At this time there is no cure for Mitochondrial Disease. More children's lives are cut short from Mito than childhood cancers. For our family, it is a 25% chance that if we have other children, they will also be affected by this disease. Please help us raise awareness and funds to help find a cure to Mitochondrial Disease.
Lorelei, and her Mito-Warrior Friends are worth a cure.
Dr. Falk's Lab.
In 2013, Dr. Marni Falk and her staff of scientiests at the Children's Hospital of Philadelphia, identified the gene that is causing Lorelei'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 adn what can be done to counter the effects of the gene's mutation.