Thank you for taking time to learn about Rylie Maedler and considering a donation. While Rylie has made huge strides in battling her tumor, her family faces medical expenses not covered by insurance.
By age 10, Rylie Maedler had battled an aggressive giant cell bone tumor, changed a senator’s mind about medical cannabis, and started her own nonprofit to help kids like her. Rylie wants to grow up to be a fashion designer, singer, pianist, author, and motivational speaker. Already she works on her own children’s’ book and speaks to other children who are going through similar circumstances.
It all started in September, 2013, when Rylie was seven years old. Her mother, Janie, noticed that Rylie’s face was asymmetrical and inflamed. She recalls thinking it might have been allergies, and asked other parents if they noticed it. A nurse friend encouraged her to have it checked out. Rylie saw an allergist and a pediatrician, yet her parents knew it was something more serious.
After getting a CAT scan, an MRI, plus some other tests at Al Dupont Children’s Hospital, Rylie’s doctors believed it was cancer and scheduled surgery to put in a chemotherapy port. After 45 minutes into the surgery, the doctor came out with a grin, and reported to Rylie’s family that after a bone sliver biopsy, pathology didn’t believe it was cancer. After 46 more tests performed on the biopsy to reveal the real explanation: a rare and aggressive giant cell granuloma that mimics cancer.
In November, Rylie had her tumor debulking/reconstructive surgery, which took six hours. However, a small piece of her tumor was left behind, giving her a 60 percent chance of reoccurrence. Additionally, doctors stitched her teeth into her skin and put her on a liquid diet for four months, and they miraculously saved her teeth!
Two weeks later, Rylie began having seizures and was diagnosed with a disorder. Rylie’s parents, Janie and Sean Maedler, researched all they could do to prevent reoccurrence, minimize nerve damage, and encourage bone regeneration. In their research, they discovered cannabis oil and its remarkable effect on Rylie’s pain, seizures, and overall functionalities. Yet it is not legal for children in Delaware.
The Maedlers met with Senator Lopez, who previously campaigned against medical cannabis. They were able to change his mind with medical records and research. He then helped them in their fight for Rylie’s medication. This effort eventually led to the drafting of “Rylie’s Law,” allowing children the same access as adults to medical cannabis for treating debilitating health issues. Rylie even stood in front of 60 legislators and used her public speaking skills and bravery to explain to them the impact this would have in not only her life, but for many other children in Delaware.
Even after Rylie’s Law has passed through the House unanimously and Rylie was feeling better, she never gave up battling cancer. After receiving an iPod from her grandmother, Rylie realized the gift’s value in distracting her during medical procedures and long drives to the hospital. She decided to start Rylie’s Smile Foundation to help give away iPods to other children battling life threatening diseases and disorders. By fighting tumors with technology, Rylie has brought comfort to many children and raised over $10,000 last year. She is thankful for this miracle and and wants to put smiles on other children’s faces. Rylie helps others with Rylie’s Smile Foundation, her children’s’ books, and with her own smile and positive attitude.
Rylie’s doctors and teachers say her healing has been nothing short of remarkable. Pharmaceuticals made Rylie zombie-like, depressed, and stole her spunky fun-loving self. The drugs didn’t relieve her pain and gave her harmful side effects. After using the cannabis oil, many of her teeth regenerated. She is more focused in school, and her pain and seizures are fairly controlled. Rylie recently had a scan in March, and it was clear that her tumor did not reoccur!
Still a major problem is that Rylie’s medicinal oil is very expensive and not covered by insurance. She uses 140 mg of CBD and 25mg of THCA, netting about $800-$900 a month. Rylie’s fight continues, and still she enjoys a much better quality of life, now. Any help is appreciated, and no contribution is too small. Thank you again for taking time to learn about Rylie. Please consider a donation.