Individuals, businesses, brands, and foundations are well welcome to donate, all fully tax deductible. GiveTaxFree will email you a receipt immediately upon completion. Below is a Link to the Story of Layla’s World First Cancer Breakthrough on CBS From December 2023 – Functional Precision Medicine, Personalized Live Tissue Drug Screening
Layla Mahoney came into the world over 9 1/2 years ago, and sadly, will soon lose her life to brain and spine cancer, unnecessarily. First diagnosed on August 1st, of 2021, and now with innumerable lesions, a recent MRI showed many key areas progressing rapidly. “Weeks, maybe a couple months,” we have been told is all we heartbreakingly have left with her. Even more painful, is that her death is wrongful as hindsight has shown us that her case was easily winnable. This is a campaign to cover end of life/burial costs, to aid in recouping her family’s astronomical financial loss, and once she is gone to give her family time to themselves, to try to do the impossible, heal.
We have been searching the corners of the globe for answers, and in the process delivering to the medical community several world firsts that the cancer world has never seen which may save millions, or more, going forward, all the while forsaking our own financial well being to try to save her, and other kids, while unearthing these discoveries. We are taking the very unconventional approach of honoring her while she is still here to show her the love, but also, once she is gone, to have no distractions in beginning the grieving process. Layla will also be buried sustainably, something the adult version of her, her animal and nature loving self, would want, which is quite a bit more costly.
Layla has a great white shark named after her, was given a sh0ut-out on NatGeo’s SharkFest in 2022, has been featured on NatGeo’s Critter Fixer show where she palpated a cow (checked it for pregnancy, rectally) when relocated to Georgia for a clinical trial, has released hundreds of endangered monarch butterflies, and at the completion of her second time doing radiation in 2023, refused to ring the bell at the UCSD radiation center because, “it’s not the real bell,” from Top Gun Maverick. A week later though, she rang a bell, at the real and original “Top Gun” bar on the North Island Naval Base where a dozen female Naval Aviators came out to celebrate her. She did not ring just any bell though, she rang the actual bell used in Top Gun Maverick and rang up a $230 bar tab in the process because she became the youngest person in United States Naval history to buy a bar a round of beers. The bar is small and intimate, so they created a temporary one for the movie.
Make no mistake about it, whether it is with animals, nature, conservation, sustainability, or the Navy, Layla is a big deal and time will show that she was a very important historical figure, notably and sadly, in the cancer world. Layla has been the catalyst for so much sweeping change, so many new treatment options and methods that are personalized right down to the individual patient. This concept, is very likely to save many of us who inevitably and overwhelmingly, will get cancer.
Layla’s incredibly tremendous impact on the future of cancer outcomes for all humans, adult and child, cannot but understated. It is factual and undeniable, likely to result in tens of millions of lives being saved over the coming decades through functional precision medicine, personalized medicine catered to each specific patient, making each a 1-of-1.
Layla’s family is staring down the barrel of being forced to sell everything, on top of losing their heart and soul. The financial losses are well in to the hundreds of thousands of dollars through expenses, travel, relocations, testing, measures to keep her spirit bright and most of all, lost wages. Life savings, investments, and more, all gone. Layla’s Father gave up every aspect of his life to try to save her, “laser focus,” including shutting down his 13-year marketing business in June of 2022, 2 1/2 years ago now, to try to find a cure for her when her disease ramped up. He has not worked or earned a penny since while ensuring to support her Mother to be able to work, who is the source of insurance.
Layla was diagnosed with the 2nd most common malignant brain cancer in August of 2021, ependymoma,which was first discovered in 1924. In the beginning of 2023, Layla was the only living ependymoma pediatric patient with her freshly resected and unfrozen brain tissue tested against 200+ FDA approved drugs to see what it would respond to in a lab, personalized/functional precision medicine, also known as “drug screens.” CBS ran a great story on this last year which you can see at the top of this page. In the beginning of 2024, Layla was still the only ependymoma kid with this, but hundreds of desperate parents had been letting Layla’s Father know they were out of options, needed it, and would pay for the cost out of pocket, thousands of dollars, as it was only available on a clinical trial not open to ependymoma. Since January of 2023, because we have this unique testing, and because of Layla’s Father’s unique “seat” in the medical world with unprecedented access to the world’s top Drs. and Researchers, Layla’s Dad has selflessly helped over 160+ families with children in need with brain tumors and pulled 13 back from the brink, with several still alive including 2 given as little as two weeks to live.
Her Father, a marketer and non-medical professional, was asked in March of 2022 to join the ependymoma working group led by MD’s and PhD’s from Boston Children’s, Dana Farber, Children’s National, St. Jude, MD Anderson, and others, as the voice of the parents. His work, has been absolutely astounding in sort of becoming a much needed central communication hub for the medical professionals on what is or may be working, trends we are seeing. So in early 2024, he went to the labs and researchers and told them, we have to get this done, we have to open the drug screening to anyone who needs it that is willing to pay. These families are desperate and out of options so at the start of the year, he worked tirelessly to help these families get it done along with the drug screen teams. We have learned more about ependymoma in 2024 than we have in the last century, thanks to these efforts.
In January of 2024, 10-11 months ago there was one, Layla. But at the time of this write up, there are now over 20 kids with these drug screens for ependymoma, far exceeding medulloblastoma, the #1 most common malignant pediatric brain cancer which has a trial for the drug screens, where the cost is covered. But for ependymoma, it is thousands of dollars out of pocket. While it is working for some, and did work for Layla for some time, sadly for her, it came too late and too far down the line with her journey as she was given all the wrong treatments on the front end within the first 6-months of her journey. We’ve been sort of chasing a ghost ever since as this disease, ependymoma, first discovered 100-years ago in 1924, has had something ground breaking revealed about it through the drug screens for these 20 or so kids; we have been treating it all wrong for a century’s time. Most of the drugs used to historically treat this are at the bottom 1/3 of the list, or worse, and Layla was prescribed many of those treatments, which did not come even close to working, while absolutely ravaging her body. But all the while, we worked tirelessly to preserve every ounce of her ever important spirit.
Layla, known as the shark girl or monarch butterfly girl by her classmates and other friends at school, is perhaps the greatest gift to the cancer that the world has ever seen. Adults and children, all will benefit from the doors that she has been the catalyst to have blown wide open. After all, 1 in 2 women, and 1 in 3 men, will get cancer in their lifetime. In a trial out of Florida, 83% of patients who following a personalized treatment roadmap based on drug screen data, did 1,300% better than those flying blind and going off of their physicians choice.
Anyone who ever gets a solid cancer, which the vast majority are, before surgery, should coordinate to get the drug screening done, and know first and foremost what won’t work, and then from what is left over, what may. It will save millions of lives, and we will have Layla, and kids like her, to thank.
In the season of giving, many seek to make year end donations for tax reasons but also to make an impact. We realize that people truly want to know where there money will go and its direct impact. Your money will go to hopefully allowing us to remain in place, in the home she grew up in, and begin to heal once Layla passes away. Layla will leave us behind, but also her little brother who absolutely, adores her. These donations, will help us tremendously with end of life costs as well as to hopefully help remove the financial stressor that has been ever apparent, the elephant looming in the room for more than two years now, all as we are about to pay the ultimate price despite our public health changing efforts. We thank you for your tax deductible donations.
Also, below is a link to more of her journey, her original journey video and what we had hoped to have happened, so long ago.
Thank you all, so, so very much.