Dear Sir or Madame,

I am writing to you on behalf of the Huelin family. If you would please take a moment and read through the information we have sent, it would be greatly appreciated.

The Huelin’s are a lovely family of five. Two of their children have been diagnosed with a terminal illness called Batten’s Disease. Jamie, their daughter who is 5, was diagnosed in 2005. Carson, their son who is 2 1/2, was just diagnosed this past month (Sept 2006). Attached is further information on the disease, but the simple version is, a genetic disorder that causes the brain to shrink, in turn, causes loss of functions – example, loss of muscle tone (can’t sit up walk etc.), loss of swallowing mechanism (feeding tube needed), eye sight, etc., and eventually life. Life expectancy is between the ages of 8 to 12. These are the devastating facts that this family has to live with everyday for the past two years. Going to bed every night and waking up every morning, knowing that this is going to be the fate of their daughter. They’ve dealt with the losses that their daughter has incurred, been frustrated with lack of medical knowledge and funding surrounding these small percentages of cases, and have been financially challenged with medical expenses. Still they manage to fight the fight. The final blow was delivered last month with news that Carson has the disease as well. Imagine dealing with the devastating news that one of your children is terminal, and then add a second to that. It’s just heart wrenching. Please see the attached article from the Toronto Sun.

This is a family in crisis. They are very hard working people – Mom (Lori Ann) and Dad (Sheldon) both work full time to support the family needs and medical expenses. Lori Ann’s devoted Aunt (Suzy) has moved from Newfoundland to move in with the family to help care for the children. Their children are their live, and the possibility of living without them is not an option for this family. They are financially just keeping their heads above water, but there is little left for savings and that is why we are appealing to the public and to corporations for help and support.

With all this being said we are holding out some hope that there is some light at the end of this very dark tunnel. There is a procedure available in China that has been tried, tested, and true (attached is information about the procedure that has been performed on other similar children). This is not available in here in Canada, and the waiting list in the United States is so long that it would be too late for both children.

This procedure will mean reversing the affects that the disease has had on Jamie and for Carson will virtually stop the disease from progressing. A website with further information is www.stemcellschina.com

 

Our goal, our hope is to be able to raise $150,000.00 by spring 2007, for both children. They will go together for the procedure (this will save a significant amount of money with both of them going at the same time). We know this is an aggressive goal, but so is this disease. The longer we wait the faster this disease will take hold of these children.

 

We thank you in advance for your consideration. Any form of donation is appreciated.

 

Donation information is available through our website www.jamieandcarson.com

Our Bank information is Bank of Nova Scotia – Transit# 61952-002, Account # 0106089, and donations can be made from any bank, or mailed to our P.O. Box # 25084, West Brantford RPO, Brantford, ON N3T 6K5, made out to Huelin in trust Jamie and Carson. If you wish to contact us directly our phone number is 1-866-553-0770.

 

Thank you again for your consideration.

 

Lori Borsellino, (family representative) and The Huelin Family