December 11, 2024
One Saskatchewan family is in desperate need of help for their daughter, Emilie Samson, who has tumours on her brain and spine.
Emilie’s last resort is a medication that costs $23,000 a month and will take at least three months to see improvement.
“It’s tough. It’s torn us apart, but it’s also brought us closer together in other ways,” said Noel and Michelle Samson, Emilie’s parents.
Emilie is only 19 years old and is being faced with this potentially fatal diagnosis.
In July 2022, Emilie started experiencing headaches and sinus issues that were causing her to be unable to do what she loved.
Her parents, Noel and Michelle Samson, insisted on a CT scan that showed one of their worst fears — inoperable tumours.
“When she was diagnosed with this, she basically looked at us and I said, ‘How are you and mom going to deal with this?’ Like that she’s more worried about us … than herself,” said Noel.
Emilie has hemangioblastoma tumours, which are non-cancerous but are rare and life-threatening.
Because of these, she lost some of her vision and is currently using a walker to help with her mobility.
Due to the nature of her condition her parents have had to stop working and have even out their house up for sale to help with the costs of being by her side and also her last resort treatment.
“It’s starting to get to her and wear down her morale and stuff,” said Noel.
Emilie has undergone many surgeries and 30 rounds of radiation — that didn’t affect the tumours.
Her last hope is a medication called Belzutifan which is most often used for people with Von Hillel-Landau syndrome, which Emilie doesn’t have but shares the same kind of tumours.
This medication is her last hope before experimental trials at the Mayo Clinic.
The family requested coverage from their insurance and the government for this medication but were denied — which has caused the family great distress.
“If it was their kids eyes they were looking into when they’re denying her this this potential life-saving medication, like would they be able to do that. Like just put yourself in our shoes,” said Noel and Michelle.
The family has hosted fundraisers, is selling shirts for awareness and has a GoFundMe page— saying they have been overwhelmed with support.
“Friends, family, even people we don’t even know have been in our corner helping us. It’s been overwhelming the amount of support,” said Noel.
The family said that for anyone going through something similar to keep pushing.
“Don’t give up. Don’t give up. Keep pushing. Push as hard as you have to to get the result you want,” said Noel and Michelle.
Saskatchewan Health Minister Jeremy Cockrill said he is unaware of this specific case, adding he is not sure where they are at in adding the needed medication to the province’s formulary.
“There is in the interim, there’s also a process, you know, an exceptional drug status where we can approve drugs in specific situations. Typically, that’s brought forward by the physician. So again, I’ll have my office reach out and understand where we’re at with that specific case,” said Cockrill.
The Samson family confirmed they attempted to get approved for exceptional drug status and was denied.
