Wednesday, November 19, 2008
I gave Joe the picture book I made for him of photos of you and him, and photos of you playing baseball or with baseball players. You don't look so good in the photos of the two of you, but I didn't have much to work with.
At first Joe didn't understand where it came from. I kidded him that I bought it at Barnes and Noble. Then I explained that I made it on the computer. I think he likes it. I put it up on his night-table.
I think he wanted more text. He is learning to read right now - he read all of Green Eggs and Ham to me last night - and he was looking for words but there is only print on the cover and the back of the book.
Jack was there when I gave it to Joe. I said that I'd make him one if he ever wanted it. I try not to push you in his face 'cause I know he has his own way of dealing with you and his grief.
I think Mom's book will be a much nicer way for us all to remember you. When I read the draft I start choosing photos that go along with the action. I think we can put together a nice little movie of photos and video that can accompany or help sell the book.
Having been diagnosed with an illness that affects just two in a million, 24-year-old Ben Murnane has been through more in his life than most of us will ever endure, writes Joy Orpen
Elan is a hip guy and he’ll pull through
Friday, November 07, 2008
Jasper’s brave fight
Diagnosed with fanconi anaemia in February last year, the five-year-old has blood tests every three months and bone marrow tests every year to make sure his condition has not worsened.
Jasper has a high risk of developing head and neck cancer, leukaemia and bone marrow failure and has a life expectancy of 29.
Brooke said she and husband Paul had to be positive about the future and “not be reactive but proactive”. Having an early diagnosis helped.
She said the doctors could not explain Jasper’s abnormalities such as his small size when he was born and after years of blood tests and referrals from pediatricians to geneticists since he was six months old, the rare diagnosis was made.
“We are actively looking for a bone marrow match and are on the national registry,” she said.
“We feel it gives us more control.
“He is healthy at the moment and we don’t really need to worry about things too much.
“If you’re not positive then what else have you got?”
Brooke said Jasper, who only had a 25 per cent chance of being born with fanconi anaemia, had some idea he had the disease.
“We told him he has special bugs and got half from mummy and half from daddy,” she said.
“He says ‘I don’t want my bugs’ and ‘why do I have to have them?’.
“He asks a lot of questions and we try keep answers as simple as possible.”
Brooke, Paul and Jasper have met other families dealing with fanconi anaemia and Brooke said they offered each other much- needed support.
She said in the past year alone, with medical research and advancements, the life expectancy had increased from 21 to 29.
“Medicine moves foward and you have to have hope,” she said.
Brooke is fundraising to raise money for further research into the disease. She sells key chains and other items and said she wanted to increase public awareness about the disease.
“There is something special about the FA kids and we have to do what we can to find a cure, because if we don’t no one else will,” she said.
“As much as it is awful and wouldn’t wish it on anyone else, we wouldn’t change him for anything. You can take it with doom and gloom and look at it the negative way, but that’s not going to get you anywhere.”
To donate, visit www.fanconi. org.au. And check out Jasper’s website at www.jaspermiles.blogspot. com.
The Hamilton Spectator
(Nov 7, 2008) It was Keswick Blake's first time giving blood.
The father of three hopes his donation yesterday will inspire others of ethnically diverse backgrounds to give blood and register to donate stem cells.
His two sons, seven-year-old Lucas and five-month-old Owen, have rare blood diseases and desperately need to match up with a stem cell donor.
But there still aren't enough people from ethnically diverse backgrounds donating to find a match, said Teri Crutcher, a donor management co-ordinator with One Match Stem Cell and Marrow Network.
Blake is Jamaican and his wife, Manuela, is Portuguese.
Their sons suffer from Fanconi anemia, a rare genetic disease that destroys the body's ability to reproduce blood cells.
While Owen is doing well, Lucas's condition is causing him to be much more physically weak and tired, Manuela said.
Lucas is home-schooled to avoid catching a cold, which would debilitate his already weak immune system.
Both boys need a marrow transplant, Lucas much sooner, his mom said.
The Canadian Blood Services needs more people who are black, biracial or of European descent to register to donate stem cells to better find a match for the two boys.
Since The Spectator first wrote about the family's plight in September, 3,900 people have registered to donate stem cells, up from 1,700 in the September-to-November period last year.
They still haven't found a match, though.
In Canada, 83 per cent of stem cell donor registrations are caucasian, which includes Portuguese.
Less than 1 per cent of stem cell donor registrants are black, Crutcher said.
"There are a lot of misconceptions surrounding stem cell donation in ethnic communities," Crutcher said.
"It is a hurdle for us to overcome," Crutcher added.
Some recent immigrants voice superstitions around giving blood, while other misconceptions include unwarranted fears the stem cell donation procedures are painful, she added.
Canadian Blood Services has been making inroads in diverse communities and is working with student groups at colleges and universities, including McMaster, to encourage people to donate, she said.
"Canada's population has grown more diverse over the past 10 years," she said.
"As the face of Canada changes, we have to respond to that."
When people register to donate stem cells, they must be matched first before actually donating. To register, go to www.onematch.ca.
allen has shared a photo book with you.
22 pages, contains 23 photos
He has been saying how he wishes he knew you. I hope that this helps him. It can sit on his night table with all of his baseball books.
Link to view this photo book:
Skip viewer, buy this book now