Laps 4 Life: Our Mission
Laps 4 Life was created in 2013 to provide financial assistance to Manitoba families affected by Batten Disease and raise awareness of the disease as well.
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. They then 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 birthday.
Batten Disease is extremely rare; we believe that there are currently only 12 kids in all of Canada who have it.
Laps 4 Life currently supports 4 Manitoba families affected by Batten Disease.
Because Batten Disease is so rare, there is no funding from the Canadian government for treatment or research. Children with Batten Disease don’t always qualify for the same level of funding for vital equipment and services that are available to other sick kids and even if they do qualify, the disease often progresses too quickly for them to be able to wait for government-funded equipment.Families are then left to pay out-of-pocket for the equipment that they need to care for their children. This, combined with the fact that one parent is required to leave their place of employment to care for their child, places a great financial strain on the family.
All of the proceeds from the Laps 4 Life initiatives go directly to these families to help ease this financial burden.
* The goals of the race are two-fold.
- First, we aim to raise money for the families affected by the disease to help with the financial strain of looking after a loved one with a terminal disease.
- It is also our goal to raise awareness for Batten Disease and educate people about what the disease is, so there is a higher level of understanding in the general public.
As part of our mandate, Laps 4 Life supports families for 2 years after a child has passed away.
Children diagnosed with Batten Disease must identify themselves to the Laps 4 Life team PRIOR to January 1st of the year prior to the race to be eligible for financial support.
- The race provides a wonderful opportunity for families, friends and community members to gather and not only show financial support for these families but emotional support as well. With the help of community education initiatives we are hoping to help spread the word about Batten Disease so these families no longer feel like they are going on this journey alone.
- Since the costs associated with caring for a terminally ill child are so high, the Laps 4 Life Team has mandated that financial support will be offered for two years after a child has passed away in order to help alleviate this financial burden.
This year the race will be held on Saturday, April 27th, 2019 at Kildonan Park.
Click here to contact the Laps 4 Life Team and find out how you can be involved.