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Young boy with rare disease gets funding boost from Spruce Grove community
10-year-old Zach Klassen and his mother Tanis accept a cheque for $4,000 on Friday, Dec. 14, 2012. The money was raised by Spruce Grove Wal-Mart staff. Zach has a rare disease and recently had his funding source for medication cut off. His family is now searching for a new funding source.
Linda Hoang, CTV Edmonton
Published Friday, December 14, 2012 12:24PM MST
An Edmonton-area boy with a rare disease, who recently had medication funding cut off, got a big funding boost on Friday.
Staff at the Wal-Mart in Spruce Grove have been working to raise money for 10-year-old Zach Klassen. On Friday, they presented the family with a cheque for $4,000.
Zach’s has idiopathic hypoparathyroidism, a rare form of an already rare disease.
Zach’s body is unable to make a parathyroid hormone, so it doesn’t know what to do with calcium. He lives with anxiety, poor circulation and intestinal problems, and has been taking costly medication for the last several years in order to fight off renal damage.
The medication costs as much as $80,000 per year, and up until recently had been covered by a research institute in the United States. Now Zach’s family is struggling to find a new funding source.
“They sent us home with about 28 vials and we do have some reserve. We’ll be able to go for probably about six months and then he will run out of treatment, he will run out of the medicine that he needs,” Zach’s mom Tanis said on Friday, after the cheque presentation.
An emotional Tanis said receiving the money, and having community support has been overwhelming.
“They have been so amazing, the whole group, and not just today,” she said.
“If I come in and shop they come over and give us a hug. It’s just wonderful. They are really great people here.”
Tanis says events like the cheque presentation on Friday, help raise awareness about Zach’s disease.