Welcome to Laps 4 Life
The Laps for Life Fun Run was created in 2013 to help raise money for four Manitoba families who have children with a rare disease called Batten Disease.
Batten Disease is a rare neurological disorder that has different types depending on the age people start to show its symptoms. The children that we are fundraising for all have Late Infantile Batten Disease, meaning that they grew up appearing perfectly healthy until about age 4. Then they began having trouble forming their words, started stumbling, and started having seizures. Children with Late Infantile Batten Disease gradually go blind, lose the ability to walk and talk, and become mentally impaired. This disease is always fatal and there is no cure. Children with Late Infantile Batten Disease generally do not live much past their 12th or 13th birthday.
Batten Disease is extremely rare; we believe that there are currently only 12 kids in all of Canada who have it.
On April 28th, 2018 we will be hosting our 6th Laps 4 Life race. In the past 6 years we have been able to raise tens of thousands of dollars for our families, coordinate the purchase of a wheelchair for our families and raise a great deal of awareness about Batten Disease.
There is a lot of work to be done yet, however. Because Batten Disease is so rare, our children often miss out on getting access to vital equipment and services that are generally made available to other sick children. In some cases they may not qualify for funding, and if they do qualify, the funding process often takes longer than the families can wait for it. Batten Disease progresses quite quickly, so families simply cannot wait several months for the equipment they need. For example, one of our families needed a bath chair for their daughter. It took 8 months for the province to get that chair to the family, and by the time the family did get it, their daughter had lost the ability to use the chair. For this reason families are often left to pay for equipment out of their own pocket.
The Laps 4 Life Team works very hard each year to help ease this financial burden as well as raise awareness about the disease and create a community of people who can offer emotional support to our families. In the past 6 years a great number of businesses and volunteers have come forward to ensure that our Manitoba Batten Families have the support they need.