Saturday, 31 May 2008
I did get to the House on the 22nd of May with my school. As part of the school's community service ideals we spread ourselves through out the city cleaning beaches, helping shelters, feeding people and cleaning cars.
I was at the house with a team of 12 or so and they were given various tasks like sweeping up the grounds, sanding down some old benches that needed sprucing up, and a general good old fashioned clean up! The kids did great, but some were in need of the little instruction on the correct operation of a push broom!
The neck kept me out of the house for the Friday shift so I will be back this next one! friday.
Wednesday, 21 May 2008
Saturday, 10 May 2008
I never did get to hang with the girls again. They seemed happy watching the movie with Karen so Kyle and I left. The girls will be back in June. I can tell they are warming up to us and our time will come.
Friday, 9 May 2008
My mum and dad have always donated to Canuck Place by way of the Adventure Challenge and I get to thank them again this year: Thanks Mum, thanks Dad!
Thursday, 8 May 2008
Monday, 5 May 2008
I can't forget about this Adventure I have signed myself up for. A large part of completing the race is to have a modicum of fitness. It is events like these that keep me trying to attain a decent level of fitness. How do you set your goals for fitness? Is weight loss the sole indicator of fitness? No. I like to eat. I also like to drink the occasional beer or three. The best indicator for fitness is your ability to do something as simple as moving your body!
My first goal set this season as I began to run again four weeks ago was to be able to move my body over 5k at a pace of 5 min / kilometer. I managed to do that on Sunday. Now my goal is to maintain that pace for the next five runs.....sigh.
My next goal is to be able to lift my body doing dips and chin ups. We'll have to see how that one goes.
Sunday, 4 May 2008
Last week Conner, a boy I met in April, passed away in his Dad's arms. He was three. I had just posted the story about Tamryn and Justin when I read the email about Conner. Tamryn was also three when she passed away. How devastating it must be to lose a child.
Friday, 2 May 2008
I received one of the best donations ever this week. One of my students, Justin Fishman, had emailed me and asked if he could donate to Canuck Place, even if he didn't have a cheque or a credit card. I told him he could. He came to me on Monday with an envelope and said here you go! He then went on to tell me that he had stayed at the house a few years back. His sister, Tamryn, had Tay-Sachs and Justin's family became part of the Canuck Place family. I found an article from West Coast Family ( westcoastfamily.com ) and have included it in this post. The link to the article is here: West Coast Family --Tamryn Fishman
On July 9th, 1996,Marty and Paulette Fishman thought their lives were perfect. Their second child, a beautiful baby girl named Tamryn, was born. But the family’s happiness was cruelly short-lived. In the months following her birth, the Fishman’s slowly became concerned by their daughter’s slow development.
“We ended up seeing a paediatric neurologist, and were preparing for the possibility that Tamryn might have a neuromuscular problem and might even need a wheelchair,” shares dad, Marty Fishman, “but we were not prepared for the verdict we were delivered: our daughter would be blind and prone to seizures—and would be dead in two or three years!” Tamryn was diagnosed with Tay-Sachs Disease, a genetic disorder caused by the lack of an enzyme necessary for breaking down fatty acids in the brain and central nervous system. When two carriers become parents, there is a one in four chance their child will develop Tay-Sachs. To this day, there is no cure. For the Fishman’s, the thought of such a diagnosis was unbelievable. “Because originally, one of us had been screened and found to be a Tay-Sachs carrier as a youth, the other went for premarital Tay-Sachs screening and was found not to be a carrier,” explains Marty. “We knew that both parents had to be carriers for a child to have this disease, so [we thought] it would be impossible for us to have an affected child.”
Using samples from the Fishman’s and other Tay-Sachs carriers, scientists have since discovered an extraneous factor outside the carrier gene that lead screening to produce a “false normal” result. But for Tamryn, the discovery came too late. For the three years that followed her birth,Marty and Paulette’s lives were consumed with care for their daughter. “We decided right from the start that we would keep her at home and not place her in an institution,” says Marty. “We watched as she became progressively blind and immobile, and as she developed seizures and became unable to eat or drink. She never walked or spoke.” In a heart-wrenching twist, Tamryn also lost all expression in her young face, leaving her mom and dad to pray their daughter was not suffering. After a courageous and difficult battle, Tamryn’s young life came to an end at just three years of age. For her parents, the pain of losing their beloved daughter will never heal. However, they both take small comfort in the progress being made in genetic research. The extraneous genetic abnormality that caused Tamryn’s “false normal” diagnosis has now been accounted for, and the screening test has been replaced. “Without the knowledge that there are people and researchers who care enough to keep working with affected individuals and their families, and to keep working for cures for these genetic diseases, it would be easy to give up hope,” says Marty. One such Organization is the Canadian Gene Cure Foundation (CGCF) whose Annual fundraiser, Jeans For Genes Day® takes place in schools and workplaces across Canada each October. This year’s goal is to reach $500,000. Jeans For Genes Day is a unique example of how one small day can make a difference in lives of many. And for the Fishman’s, it brings a small amount of hope that it works to save even just one family from the pain of losing a child. “Organizations that fund this type of care and research,” continues Marty, “are providing a lifeline to those families who are unfortunate enough to carry genetic abnormalities that take the lives of their children.”
Article contributed by Dr. Rob Abbott in collaboration with Marty and Paulette Fishman. Rob Abbott, CEO of the Canadian Genetic Diseases Network and the Canadian Gene Cure Foundation devotes his time and expertise to the annual fundraiser, Jeans For Genes Day®.
There is a Tamryn Fishman Fund that is operated by the Jewish Community Centre's Early Childhood Centre. Information can be found and donations received at the JCC.
I would like to thank Justin for a wonderful donation.
I said hospice. Not really a word that you associate with children but there you go. We will tell you about the house as this blog progresses with the hope that you will learn, and as you learn we hope that you will share. The purpose of the Adventure Challenge is to raise money for AND awareness about Canuck Place.
The name of each kid at the house you read about has been changed.
September 14th and 15th are the dates for the next Adventure Challenges.
You can sponsor me for the race here: Adventure Challenge
Maybe you should do the race?