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3 Alberta siblings with rare, terminal disorder finally have hope for a treatment

A family from Alberta with three children who have been diagnosed with the rare and fatal Batten disease has been given a new kind of hope due to an older medication.

We re praying for a miracle : 3 Alberta siblings diagnosed with rare, terminal disease

  EDMONTON A family of six from Evansburg, Alta., is devastated after finding out three of their four children have a rare, terminal disease. Katie and Jacob Lamprecht told CTV News Edmonton their children Hannah, 8, Kiara, 10 and AJ, 5, were all diagnosed with Batten disease, a nervous system condition which deteriorates both the mind and body, within a year from each other. In January 2020, Hannah’s teacher noticed she was having troubles reading the whiteboard in class, Katie said. After multiple trips to the optometrist Hannah was originally diagnosed with Stargardt disease, a vision loss illness. To confirm that diagnosis, the specialist followed up with genetic testing.

Calgary woman hiking triple crown to help three terminal siblings

Jeanine Dalton is looking to climb three mountain peaks in one day. It s a challenging task at over 22 kilometres with an elevation of 2920 metres, but in Dalton s view, that s nothing compared to what her friends the Lamprecht family face every day at their home west of Edmonton in Evansburg.

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