Life for Luke

For 10 years, the family and friends of Lucy and Enio Liegghio have organized a spectacular Life For Luke Dinner Gala in support of the SickKids Foundation and the Canadian Chapter of the National Niemann-Pick Disease Foundation.  


Niemann-Pick Disease(NPD) is one of a group of lysosomal storage diseases that affect metabolism and that are caused by genetic mutations. The three most commonly recognized forms are Niemann-Pick Types A, B and C.


Niemann-Pick Disease Type C (NPC) most often strikes young children or infants. It is not easy to diagnose and it is always fatal. Luke Liegghio, Alex Vaughan and Laura Vaughan were 8, 4 and 6 respectively when they died from NPC.  Their bodies were not able to metabolize cholesterol and other lipids properly within the cell. Consequently, excessive amounts of cholesterol accumulate within the liver and spleen and excessive amounts of other lipids accumulate in the brain.  


My friends Allan and Tammy Vaughan lost 2 children to NPC.  Alex would be 23 and Laura 15, if they were still alive.  I met Al and Tammy in high school up in Hanover way back in 1978.  We never could have imagined how our lives would be affected by this disease.  I was honoured to be asked to be a founding board member of the Canadian Chapter of the National Niemann-Pick Disease Foundation. We want to do everything we can to keep another family from losing a child. 


Here are some interesting numbers:

• 500 - the estimated number of NPC cases world-wide
• 675 - the number of people at the Life for Luke event   
• 3,340 - the number of Canadians who will be diagnosed with cancer every week.

Raising awareness and money to support research for a rare disease like Niemann-Pick is a challenge.  Events like Life for Luke and the Alex & Laura Vaughan Memorial Golf Tournament have raised over $1 million dollars to support research and support families.  

There are so many charities and causes that need our support - either with time or money.  I'm not able to give a lot, but I am proud of what I can do to make the difference to 500 kids, their families and friends.  

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The Life for Luke Gala was sad, poignant and hopeful.  Amid the tears, there was fun and laughter.  The first few years I attended the Life for Luke event, I went on my own and sat with Allan, Tammy and various board members and on occasion, was seated with local elected officials.  The past two years I invited some girlfriends to join me. Last year Carol, Laurie and Marion bought tickets and attended the gala.  We had fun bidding on silent auction items and dancing the night away.  

This year, Paula, Brigid and Brigid's friend Rosa joined me.  

It was great to spend time with Tammy and Allan again (the golf tournament is June 25th this year).

Paula couldn't help teasing me when she found out that the midnight porchetta buffet was my favourite part of the evening.  I'm kicking myself for not offering to buy the remains of this little piggy.  Oh man, all the food was delicious, but that pork was divine.

We dressed up, enjoyed great food, furiously bid on some great silent auction items, connected with old friends, made some new ones, danced like it was 1999 and had a fabulous evening. There are thousands of these charity events in our area every year. Put on by thousands of volunteers and supported by thousands more.  

Fundraiser by fundraiser, board meeting by board meeting, we are all making a difference.