A gene therapy research program could be a bright spot for eleven-year-old Lotte from Stadskanaal. She suffers from the hereditary disease myotonic dystrophy: a muscle disease in which the muscles become increasingly weaker. As it now seems, the investigation will take another five years. Lotte’s mother and bonus father try to raise money to shorten that time.
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That reports the Canal region.
Lotte’s father, Martin, died of the same muscle disease at the age of 35. Lotte is at a monitor at night to keep an eye on her heart and then receives tube feeding. There is no cure for myotonic dystrophy yet.
‘We don’t want to wait five years’
The aim of the gene therapy research program is to test gene therapy in people with a muscle disease in the Netherlands within five years, says Linda Langenburg, Lotte’s mother. “About five million euros will be needed for this over the next five years. We don’t want to wait five years, we want to draw those five years closer to us, so that there is hope for Lotte! Her health is deteriorating rapidly. We want them to have a chance for a future. ”
You can donate for Lotte through this one fundraising campaign.
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