(Photo courtesy/Jessica Griffin, Facebook)

By Ben Tompkins

von hippel-lindau syndrome

Zenon Park supporting local girl believed to be diagnosed with rare disorder

May 30, 2023 | 5:53 PM

A local high school student is believed to have been diagnosed with Von Hillel-Landau (VHL) Syndrome, and her community is rallying around her.

Arborfield School grade 12 student, Emilie Samson, who lives in Zenon Park, still needs to undergo genetic testing to confirm her diagnosis, which can cause serious, life-threatening complications.

A financial account was created by her Dad Noel’s cousin, Jessica Griffin, who told northeastNOW they’re just hoping to lift some of the burden off of living expenses, so the family can focus solely on Emilie.

“Her mom and dad are hoping to not have to work for the next few months, so they can spend as much time with her as possible because they don’t know what’s going to happen yet as the diagnosis is still not 100 per cent clear,” said Griffin.

‘Encouragement for Emilie’ is the name of the account, which was set up through Diamond North Credit Union.

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Donations can be deposited directly into the account at any one of their financial institutions across the province, while e-transfers can also be sent to michellesamson78@gmail.com.

VHL syndrome is characterized by multiple tumours called Hemangioblastomas, which is a type of brain tumour that grows in the brain and spinal cord.

Although they are benign, they press on nerves as they grow, causing a range of serious symptoms including debilitating headaches, weakness in the arms and legs, difficulty with gait, severe pain and numbness in the extremities, and sensory loss.

The condition is a rare disorder and only affects one in 36,000 people.

In Emilie’s case, three Hemangioblastomas have been confirmed. One is in her brainstem and two are on her spine, and they have been deemed untreatable at this time.

She is set to graduate school and turn 18 in June.

“Emilie has been a fighter since the moment of her birth. She was born at just 27 weeks gestation and weighed only two and a half pounds. She was amazingly strong from the start and required very little medical intervention other than a two-month stay at the NICU to enable her to grow,” added Griffin in a Facebook post.

“She is truly a remarkable girl, who is an accomplished dancer, a proficient student, and an all-around wonderful, kind, exemplary person.”

Also according to the post, Emilie’s wish is to spend the next few months travelling with her family, where they will spend that time exploring places she wishes to see.

They will also visit people as time allows and they will surround Emilie with as much love and adventure as she is able to take in.

“Her mom and dad, Noel and Michelle Samson, and her brother Cameron intend to make the most of this family time together. They have decided to suspend work for the near future and ensure that Emilie gets to fulfil her goal,” the post continued to read.

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news@northeastnow.com

On Twitter @BenTompkins_8