We would like to thank you for helping us raise over $4,100 so far! The support has been so amazing, our Family has been totally blown away. Please remember us this Summer when we are fundraising again in the Yearly Kids Coin Drive.
We invite you to join us in a group donation to Variety Club Children's Charity. Variety Club has helped us tremendously so we have decided as a Family to help fundraise for the up coming Variety Club Telethon!
We have recently been approached by Variety Club; They would like to do a story on our son, Mason. Mason was born with some special needs.
MASON'S STORY IN SHORT FORM:
When Mason was born he seemed to be healthy, It was just a few weeks after that, that we knew in our heart of hearts that something was not quite right with our son. Despite our pleas, doctors did not confirm there was a problem until he was 11 months old. We will probably never know what problems existed from birth and which ones result from months of not receiving medical treatment. Mason was initially diagnosed with failure to thrive, a very general and negative diagnosis, but now doctors have identified specific symptoms that Mason suffers.
Mason suffers from Dysphagia (aspiration) with liquids; When he drinks the first bit of each gulp goes into his lungs instead of his stomach. He also has some problems with Penetration, meaning that when he swallows some foods down the wrong way, they then come up and go down the right way. The muscle that is supposed to close entry to his lungs as he swallows is delayed with every swallow. Mason is unable to take regular liquids by mouth and some foods are just not safe. At this time the Doctors are unsure of what the underlying condition is that might be causing these symptoms.
When food does arrive in Mason's system, it is not digested well. If not treated, Mason does not gain weight or grow like a healthy baby. It is a daily, weekly, and monthly battle to keep Mason growing and healthy. Mason also suffers from severe GERD GastroEophageal Reflux Disease (Acid Reflux), Sensory issues (Hyposensitivity Feeling or Under- Responsive) and some Left side slowness.
Mason's problems with swallowing are so severe that he has had a G-tube implanted. The G-Tube is a valve on the outside of his abdomen. All of his liquid intake is fed directly into his stomach through a tube attached to that valve, bypassing his swallowing.
MASON'S MEDICAL & FEEDING SUPPLIES
On average, Mason’s G-tube feeding costs are close $100 dollars a day!
Unfortunately, we do not receive funding for the majority of Mason’s needs from the government! When Mason had his G-tube placement surgery in February, the Doctors told us it wouldn’t be a problem to get funding, but his case is so rare that perhaps they didn't realize the struggle we would face. Mason still doesn’t have a diagnosed underlying cause, therefore doesn’t "fit" under any of the existing programs. Mason falls through a hole in our health care system which is supposed to be universal. Whenever Mason is in the hospital all costs are covered. But when we take him home nobody seems to know how to have BC Medical pay any of the cost. There are efforts under way to get full government funding that everyone seems to agree should be available. But while government does not have an answer the huge costs fall back on us.
Mason is currently being fed 50ml per hour, 20 hours of each day. He needs specialized (read expensive) Formula, with food components down for his deficient digestive system. His formula is fed through a $4000 portable feeding pump carried everywhere he goes in his backpack. You've probably seen his backpack, a $500 custom model for his pump. His feeding system needs a constant supply of feeding bags, tubes, syringes, valves, etc.
The governments H.E.N. Program (Home Enteral Nutrition) covers about half of the medical costs for feeding Mason. The rest has been paid by our family, generous friends, and by Variety Club.
Our family has gone into debt for more than $24,000 dollars this year paying for all Mason’s equipment, the hospital stays, and many other expenses due to Mason’s health. This past October, we reached the point where we had borrowed all the money we could from banks and extended family. Social workers suggested 2 options: If we divorced Dana could collect welfare and have all costs covered as a single mom or we could give Mason over to Child Welfare (Foster Care) where all his needs be would met. Of course neither option is reasonable. Thanks to Variety Club, we can keep our family together.
RESCUED BY VARIETY CLUB
Variety has stepped in several times this past year, first giving us Emergency Funding to help us go home from Children’s Hospital. They gave us funding for some of our costs or the first three months. Then due to limited funds they were unable to help us with Mason’s needs for five months.
In October, Variety was able to step in again. This time Variety committed to a full year grant to cover costs of supplies that were otherwise not paid. They are funding just over half of what Mason’s anticipated needs are this year, covering most of the shortfall after funding from the H.E.N. Program.
Variety Club also purchased the Infinity Feeding Pump for Mason, a $4000 gift and a necessity for Mason to be fed and also get around. Mason carries that battery operated feeding pump in his backpack everywhere he goes.
We are so thankful to Variety and others in the Community for helping us in our time of need. We were really at the end of our rope when Variety stepped in!
GIVING BACK TO VARIETY
We have decided as a Family to help Variety Club. Please join us by donating with us in a group fund raiser to support the Variety Club Show of Hearts Telethon. Your gift would be given in his name, recognized as coming from friends and supporters of Mason.
To be clear, any money you donate is not directly supporting Mason, it goes to Variety Club for them to assign to their programs. Mason is just one of the many children that is part of the Variety family! Your gift would support any of the wonderful efforts that Variety undertakes. Variety has been generous to us and we want to give back to Variety. On the other hand, your gift back to Variety does help Mason indirectly. We have recently been approached by Variety Club, they would like to do a story on Mason. Our gift back to Variety, with your help, raises his profile in the Variety family. We want our relationship with Variety to be one that benefits Mason as well as benefitting Variety.
Our goal is to raise $2500 for Variety by January 25th, 2010!
You can donate directly to Variety Club by Credit card by visiting Mason’s Variety Fundraising page. Click on the "Sponser Us" buttons on the upper right hand side of the page. Any donation made from this page adds to Mason's group fund raising effort.
TAX RECEIPTS Variety – The Children’s Charity is happy to provide tax receipts for donations $25 and over, if given in cheque form. We require the following information to properly process a tax receipt: Donor’s Name Donor’s Address (including postal code) Donor’s Telephone Number Amount of Donation
Variety – The Children’s Charity of British Columbia is a non-profit charitable organization with a mission to raise funds and disburse grants throughout British Columbia to inspire hope, enrich lives and build a better future for children who have special needs.
A member of the worldwide organization Variety International, the BC tent (office) works year round to improve the quality of life for British Columbia’s children. Since 1965, Variety – The Children’s Charity of BC has raised and disbursed more than $140 million for this very purpose.
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