A Chestermere family is hoping to raise funds to help finance an expensive trip to Barcelona later this month, for seven-year old Michaela Wood to participate in a clinical study that will see cardiologists monitoring her heart 24 hours a day. Donations are being collected online and the family has organized a family fun day at the Chestermere Recreation Centre on Jan. 17.
“Michaela was diagnosed with congenital muscular dystrophy at age one, and two years ago, we were able to get the tests done to determine her subtype, which is LMNA (Lamin A/C),” said Penny Wood, Michaela’s mother. “Hopefully, this study will lend a hand in helping researchers find a cure for this type of muscular dystrophy.”
Currently, Michaela is unable to walk or do anything for herself, Wood said. Muscular dystrophy affects the development of her muscles, and since she is unable to stand, Michaela’s bones aren’t as strong because they don’t bear weight.
The family only found out about the study a few months ago, while in Walt Disney World on Michaela’s Make-A-Wish Foundation trip. According to Wood, the study will involve a number of specialized heart tests and the implantation of a Medtronic LINQ device, which will allow cardiologists to monitor her heart 24 hours a day.
“The battery lasts three years, and during that time, data will be transmitted directly to the cardiology team in Spain,” Wood said. “This could give early notification of deadly arrhythmias or other life threatening issues, but even if it doesn’t directly help Michaela, maybe they will be able to find something that will help them find a cure for the next generation, or the generation after that.”
The cost for the heart monitor will be covered by the Marcio Andres Foundation, Wood said, but the family will be responsible for covering all travel costs – including trips to America for echocardiograms and trips back to Barcelona to have the battery replaced after three years.
“We are estimating that our entire bill right now will be around $20,000,” Wood said. “We didn’t understand really how big of an expense this all would be. It’s a huge undertaking for us, but it’s important for us to have Michaela participate in this study.”
The family is hosting a party from 11 a.m. to 2 p.m. on Jan. 17 at the Chestermere Recreation Centre. Wood said there will be a number of activities for kids to enjoy, including bouncy houses, carnival games, snacks, a magician, balloon animals and face painting.
Donations can also be made online at legup.ca/campaigns/helping-michaela, where more than $5,000 has already been collected to help the family finance the trip. Wood’s husband, Mike, will be traveling with Michaela to Barcelona on Jan. 26, and they will return with the monitor implanted on Feb. 3.
