In many ways, Michaela Wood is a typical seven year old girl.
“I like to draw, colour, do arts and crafts, play on my ipod,” she said with a smile.
But the grade two student from Chestermere, Alta. also lives with a very rare and very difficult disease, LMNA related Muscular Dystrophy.
“I just tell my friends at school, well my muscles don’t grow like yours.”
Wood’s parents learned of their daughter’s rare diagnosis two years ago after the little girl underwent genetic testing.
Little is known about LMNA Muscular Dystrophy but research has shown adults with the disease are at an increased risk of serious heart problems including arrhythmia, cardiomyopthy and sudden cardiac death.
To date, there have been few studies involving children with LMNA. That’s why when the Wood family learned a study in Barcelona, Spain was recruiting patients under the age of 20 for a new heart study, they knew they wanted to get involved.
Wood will travel with her father to Spain on Jan. 26. Once there, researchers will implant an ECG monitor under her skin.
“It uses blue tooth technology and will monitor her heart 24 hours a day.”
All of Wood’s medical expenses related to the study will be covered but travel expenses are up to the family. They’ve been trying to fundraise as much as possible but at the end of the day, Wood’s mother Penny says no matter the cost, being involved in this research is worth it.
“If that helps get a cure eventually – even not for Michaela but for the next generation? We want to be part of it.”
The family is collecting donations to help with travel costs online. They are also hosting a fundraising children’s party at the Chestermere Rec Centre on Sunday, Jan. 17 between 11 am and 2 pm. Tickets are $10 each and can be purchased at the door or in advance by calling Christine Larocque at 403-999-1187 or Penny Wood at 587-226-6681
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