Beaconsfield Resident Hits Milestone Birthday

Lauren reaches a milestone birthday!!

Lauren has a terminal disease known as Krabbe disease. According to the Mayo Clinic -Krabbe disease (KRAH-buh ) is an inherited, often fatal disorder affecting the central nervous system causing severe degeneration of motor skills.

The disease affects muscle tone and movement, and may cause vision and hearing loss, among other devastating effects. In most cases, Krabbe disease develops in babies before 6 months of age, although it can occur in older children and in adults.

Once diagnosed ,Stephen Longheed, Lauren’s father said “ our biggest challenge was to go home and create a life for her within the limitations”. They found support at the Mackay Association for the Blind where Lauren partakes in music and pool therapy. “ The centre’s holistic view in making her life comfortable and exiting has been invaluable to the Longheeds. “We know the therapies work well for her because the disease makes her very stiff and after swim therapy she is much more comfortable for days.

Another challenge this young family faces is the constant care. Amanda could not return to work . The CLSC and Stephen’s medical insurance make up 20 hours of care while the family was assessed at needing 80 hours of care.

Lauren was brought to the Montreal Children’s hospital when she did not meet a milestone in her growth. Dr. Bernard of the Montreal Children’s diagnosed her with Krabbes due to the rapid decline in her motor skills.

Dr. Bernard is encouraged that in the next few years there will be a treatment in the form of stem cell . If Lauren had been screened at birth she would have had more options. The Longheeds hope for the medical system to start screening for Krabbe disease at birth to give young families a better hope for treatment.

The average age that children who have this disease reach is about 13 months, Lauren is turning 3!

To celebrate this amazing milestone her parents Amanda and Stephen Longheed along with Rouge Event Design put on a birthday party fundraiser at the Dollard Civic Centre January 26, 2014. Included were family events, bouncy castles, face painting, princess tea party, a reptile show. Proceeds raised at this special event go to the MAB Mackay Foundation and Lauren’s family. You can follow Lauren on her website www.lifewithlol.com