Fundraiser for Conner Laframboise to be held May 4

 

By Joel Charron

 

Vince and Michelle Laframboise have never heard their three-year-old son Connor speak.

Since he was born, Connor has been sick on and off.

The first two weeks of his life was spent in the hospital because Connor contracted a blood infection.

He has experienced a number of respiratory infections and developmental delays during his short time on this earth and by the time he was two-years-old, has been through more tests and procedures than most people have in their entire life.

For the longest time, doctors could not give an explanation to Vince and Michelle as to why this was happening to their baby boy.

“He’s had a number of diagnoses, all of them were wrong,” said Vince.

After years of living with a harsh mystery, this past October, a medical team in London discovered Connor was suffering from Multiple Sulfatase Deficiency (MSD).

MSD is a lysosomal storage disorder closely related to the mucopolysaccharidoses in which all twelve of the known sulfatase enzymes are deficient or inoperative.

MSD is caused by the deficiency of an enzyme, Formyglycine Generating Enzyme that is in turn responsible for activating a group of different enzymescalled sulfatases.

Deficiency of this enzyme results in defective functioning of all the different sulfatases. The sulfatases are a group of lysosomal enzymes that are responsible for breaking down and thus recycling complex sulphates containing sugars from both lipids and mucopolysaccharidoses.

The lipids that contain these sulfated sugars are critical for normal brain development and function.

There are 30 cases of MSD in the past 60 years.

Sadly, children affected by MSD rarely live beyond their tenth birthday.

“There is no treatment,” said Michelle. “It’s the worst thing a parent can feel. There is literally nothing we can do.”

Michelle said the only thing she and Vince can really do is try to make life more comfortable for Connor, who is celebrating his fourth birthday this June.

 

All proceeds raised during the pasta dinner fundraiser will go toward a conversion van for the family.

All proceeds raised during the pasta dinner fundraiser will go toward a conversion van for the family.

A few months ago, the staff at John McGivney Children Centre pointed the couple in the right direction about acquiring a conversion van to make life easier for Vince and Michelle as well as making it more comfortable for Connor.

“He’s getting bigger and gaining more weight,” said Michelle. “I’m having troubles trying to lift and move him around.”

With their permission the couple’s family put together a fundraiser to help raise money for a conversion van.

The fundraiser is a pasta dinner on Saturday, May 4 at the Verdi Club.

Tickets are $25 for adults, $10 for children, ages six-ten, ages five and under is free. Tickets can be purchased at the House of Shalom.

The van is approximately $42,000.

Vince and Michelle said ticket sales have been wonderful.

“The support people are giving is unreal,’ said Michelle. “This community is so generous with door prizes and donations. It’s  overwhelming.”

Donations to Connor’s CareVan can be sent to Marilyn Laframboise at 2690 Front Road, LaSalle. N9J 2N4.  Cheques can be made out to Connor’s CareVan.

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