Thursday, October 04, 2007
Here is a story about Christina Curkowskyj of Australia. She has FA, and like Amitai and Molly, she was saved by her brother who gave her new, good blood. I am glad it is working more now.
We were pretty close sweetie.
I don't know if I ever told you about another little boy named Henry who has Fanconi anemia. He lives in New York. His mommy just wrote and let us know that their new baby, Luke, is a perfect 6 out of 6 match for Henry.
Unlike us and Amitai's and Molly's parents, Henry's parents had Luke "the old fashioned way" which means without doctors helping try to make sure the baby was one who could save Henry and not have the disease.
Henry's family has been through a lot and really deserve this good news. Henry's dad was a firefighter who was at the World Trade Center buildings when they fell.
Christina smiles thanks to her little brother
October 02, 2007 12:00am
HER smile says it all. Nine-year-old Christina Curkowskyj wakes up and embraces every day, along the way teaching her family to do exactly the same
Christina, who has the rare and deadly genetic disease Fanconi's anaemia, was given three months to live almost five years ago after her bone marrow began failing.
Now she's a lively chatterbox in grade 3 who loves riding her new blue bicycle and is anxiously awaiting the arrival of a baby sister.
"I'm excited because I'm going to do a lot of work, to play with her -- and pick up after her toys," Christina said.
"But I can't keep her in my room."
Christina said she loves her brothers, Mykola, 7, and Thomas, 5, because they "encourage me".
In January 2003, Christina became the first Australian child with Fanconi's anaemia to survive a life-saving stem cell transplant from a perfectly matched sibling -- baby brother Thomas.
The ground-breaking transplant came more than a year after Christina's parents, Melbourne designer-baby pioneers Roman Curkowskyj and Tania Kutny, began their fight to create a genetically screened baby using IVF.
Thomas was conceived naturally while his parents were waiting for a decision that would allow doctors to screen IVF embryos to save their daughter.
He was a miraculous perfect tissue match with his sister.
The couple continued their battle and in the process helped change the rules for other Victorian families with terminally-ill children.
Mr Curkowskyj's IT job has taken the family from Melbourne to scenic Markham, on the outskirts of Toronto, Canada, where they expect to spend the next two years.
Christina has no serious illnesses, recently overcoming a tumour in her liver and facial paralysis from a brain infection last year.
She no longer has bone marrow failure, but still has Fanconi's anaemia, which leaves her susceptible to developing a range of cancers.
Christina has had more than 40 operations, including the transplant in which stem cells were taken from Thomas's cord blood and injected into Christina in the same way a blood transfusion is done.
She has also had skeletal and heart surgery.
Christina is being treated by a team of 13 specialists and goes weekly to rehabilitation clinics.
She has a teacher's aide and a nurse at school to help with her hourly tube-feeds, and at night she is fed by a machine. Despite the daily medical hurdles, Christina and her family are determined to make each day count.
"It's a good time," said Ms Kutny, 42.
"She's just overcome having the tumour in her liver.
"We got over that hurdle using Chinese medicine, because Western medicine didn't have any hope for us.
"We're out of hospital and life is good, and now we have another one on the way.
"As long as we are out of hospital we're happy.
"It's a time that you cherish.
"We go a lot to hospital for clinics and she is always afraid about: 'Am I going to stay?' "
After years of medical wards, Christina knows well the difference between being in hospital and at home.
"She lives it up," Ms Kutny said.
"She wakes up and she's like, 'It's a great day, I'm not there (in hospital), and I'm here and I'm here with my family and I've got my baby coming, (and) I've got my brothers'.
"She appreciates what she has, so she's learnt a lot too in her little life.
"From the time she was born, we appreciated that it was fragile -- life -- and we made a commitment that we would make the most of it."
Mr Curkowskyj, 44, said Christina was "the biggest gift we could ever have".
"She's taught us to live for today and to be grateful for today," he said.
Happy family: (from left) Tania Kutny, Christina, Roman Curkowskyj, Thomas and Mykola in Canada. Picture: Stuart Ramson