Please help support Emilie Samson with her medical expenses

Dear Friends, Family, and Kind-Hearted Strangers

My name is Jean Samson, and I would like to introduce you to my beautiful niece Emilie Samson who is fighting for her life. Emilie has been a fighter since the moment of her birth. Born at just 27 weeks gestation, weighing only 2.5 lbs., she was amazingly strong from the start. Despite her tiny size, her spirit was undeniable, and she required very little medical intervention. Emilie stayed in the NICU at the Royal University Hospital in Saskatchewan for only two months before she was sent home with a clean bill of health. Because Emilie’s life began in this way, she has been determined to always live her life to the fullest. She has become an accomplished dancer, a proficient student, and an all-around exemplary person whose kindness and zest for life brings joy to everyone she is near. No one could predict the tragedy that was to come.

In May of 2023, a month before she turned 18, Emilie began to experience pressure and pain in her head that stopped her from doing the things she loved. That year, after several hospital visits and worsening symptoms, Emilie returned to the Royal University Hospital in Saskatoon, SK where she was given a provisional diagnosis of Von Hillel-Landau Syndrome. Characterized by multiple tumors called Hemangioblastomas, this disease causes tumors that grow in the brain and on the spinal cord. Although they are not cancerous, these tumors are life-threatening, causing immense pain and suffering. VHL Syndrome is a rare disorder and affects one in 36,000 people. In Emilie’s case, three hemangioblastomas have been confirmed. One is in her brainstem and two on her spine. Without treatment, this condition is fatal. Genetic testing confirmed that Emilie does not have VHL, but the doctors believe there's a chance the tumors carry that mutation but the only way to confirm this would be doing a biopsy on the tumor which the doctors are unable to do as it would be fatal.

At that time, Emilie’s medical team informed her parents that there were only two possible courses of action: Radiation treatments to attempt to shrink the masses in her brain and spine, or Surgery to remove the tumor in her brainstem which she would not likely survive. Emilie’s wish was to spend the summer that followed her high school graduation making memories with her family while she was still able, and they did. To support their daughter, Emilie’s parents have had to give up their jobs and live on limited income to be by her side.

Over the last year, Emilie’s condition has steadily declined. In October 2023, Emilie developed hydrocephalus, a shunt was placed in Emilie’s head in the hope that the ever-building pressure on her brain might be eased. In January of this year, it became clear to Emilie, her family, and her medical team that her condition was deteriorating quickly, and that intervention was her only hope. In March of 2024, a hard decision had to be made. Radiation can come with terrible side effects, so they decided to attempt the resection of the tumor in Emilie’s brainstem. Upon reaching the tumor, the devastating truth was revealed: the tumor truly is inoperable.

Next, Emilie’s team decided to begin radiation treatment, which consisted of 30 treatments over six weeks beginning in May. After these exhausting treatments, Emilie returned home to rest. She soon became symptomatic again and was readmitted to the RUH on August 4th. The shunt that doctors had placed in her brain was no longer enough and a second shunt was placed which required three more surgeries.

Over the next two weeks, the shunts have proved to be ineffective and the ventricles in her head could not move the fluid on their own. They just would not drain. During this time in ICU, Emilie’s parents and brother have been by her side.

Right now, Emilie is at the Royal University Hospital fighting for her life. She is suffering from excruciating headaches and uncontrollable pain throughout her body which means that this trained athlete and dancer can no longer walk, or even stand, on her own. She frequently loses consciousness and is experiencing vision loss. Emilie and her family are losing hope as she fights for her life in the very hospital where her life began just 19 years ago. With every day that passes, Emilie’s chances of survival are slipping away.

She has one last hope. Emilie’s medical team have prescribed a drug called Belzutifan (also known as Welireg) as a last resort. They believe that Emilie’s tumor may respond to this treatment. This drug costs $23,000 per month. It must be taken for at least 3 months before any effects can be seen. This course of treatment is not covered by the family’s medical benefits or by Saskatchewan Health as they can not confirm the VHL and does not qualify for exceptional drug status in Emilie’s case. The medical team petitioned the drug manufacturer to provide the medication out of compassion, but this effort was unsuccessful. Emilie’s family has exhausted all avenues they have available to them, and their medical team has recommended a GoFundMe campaign be organized and shared with the public.

Through this campaign, we hope to raise $100,000 to fund the purchase of this potentially life-saving medication, and to support Emilie and her family as they navigate this impossible situation.

Please join us in an effort to help Emilie, continue to fight for her life. She is a daughter, sister, grand-daughter, niece, cousin and friend.

We know that every person who reads this, lives with the reality that it could happen to them as well. It will take a village to raise the funds to help Emilie Fight! Please consider donating anything you are able.

With love and gratitude,

The family and friends of Emilie.

A Note From Emilie's Parents:

When Emilie was first diagnosed we appealed to our local community and many of our friends, family and neighbors provided some much needed support, and we are forever grateful that Emilie has had an opportunity to experience several 'wish' moments as a result.

Thank You! The funds still remaining from that campaign will be put towards this necessary medication and to accommodate her future needs.