When our son, Mason, was born he seemed to be a healthy baby boy, but within a few weeks, we knew in our heart of hearts that something was not quite right with our son. Despite our pleas, doctors were not able to confirm that there was a problem until he was 11 months old. Mason was inititally diagnosed with failure to thrive, a very general and negative diagnosis, but now doctors have identified some of the specific symptoms that Mason has.
Mason suffers from dysphagia. When he drinks, some of the liquid goes into his lungs instead of his stomach. He also has the same problem with some foods. When he swallows some foods go down the wrong way, then come up and go down the correct 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.
The food that does arrive in Mason's stomach is not properly digested. If not treated, Mason does not gain weight or grow like a child should. It is a daily battle to keep Mason growing and healthy. Mason's problems with swallowing are so severe that he had a G-tube implanted. The G-tube is a valve on the outside of his abdomen. His entire nutrional intake is fed directly into his stomach through a tube attached to that valve, bypassing his swallowing.
Mason also suffers from severe gastroeophageal reflux disease, sensory processing disorder and many other syndromes. At this time doctors are unsure at what the underlying condition is that might be causing these symptoms.
Mason's Medical & Feeding Supplies
On average, Mason's G-tube feeding costs are close to $100 a day. Mason is currently being fed 55ml per hour, 21 hours a day. He needs specialized and very expensive formula for his deficient digestive system. His formula is fed through aportable feeding pump which he carries everywhere he goes in his backpack. The packpack is an expensive custom model for his particular pump. His feeding system needs a constant supply of feeding bags, tubes, syringes and valves.
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 2009, we were initially told that the costs would be covered but because Mason still does not have a diagnosed underlying condition he therefore does not fit under any of the existing programs.
Home Enteral Nutrition, a government program, was covering about half of the medical costs for feeding Mason. The rest had been paid by our family and friends.
In 2009, we went many thousands of dollars in debt paying for all Mason's equipment, 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.
Rescued By Variety
That is when Variety stepped in. In February 2009, they gave us a grant allowing us to go home from the hospital. In October, Variety helped us once again. This time Variety committed to a grant for a full year of supplies that were otherwise not covered by the H.E.N. Program. They are funding just over half of Mason's anticipated needs this year. Variety also purchased Mason's Infinity Feeding Pump, the necessity for Mason to be fed.
We are so thankful to Variety and those in our community of Surrey for continuing to help us in our time of need. We did not know what to do before Variety stepped in and helped. This has made an incredible difference in our lives.
Dana & Nick Sears
Giving Back to Variety
The Sears family has become a great fundraising team for Variety. Their goal to raise $2,500 for Variety by January 2010 through donations from family, friends and others in their community was surpassed by thousands! Mason will also be a new face for the Kids Coin Drive for Variety, an annual campaign every September that sees children who have been helped by Variety raising money so that Variety can continue helping children like them. Variety is truly grateful for the support of people like the Sears family! Click HERE to donate to Variety on behalf of the Sears family!
