To save her sons life, Donna is considering having another child by IVF so its stem cells can be used as a treatment for her dying son.
Fanconi anemia is the rare blood disorder the Jamie, Donna’s son, suffers from.
The disorder is caused by the hereditary loss of both copies of the Fanconi anemia gene.
A birth rate of about one in every 360,000 is approximated due to the carrier frequency being estimated at around one in every 300 people.
The name of the disorder comes from Guido Fanconi, who was the Swiss pediatrician who discovered it.
Only a perfect match from a bone marrow donor will provide Jamie with a chance to survive.
Since April of last year, when Jamie was diagnosed, the Great Ormond Street Hospital (GOSH) has been searching for a donor for the eight-year-old boy.
Donna learned from the staff at GOSH that IVF may be an option.
IVF would allow Donna to conceive with an embryo that does not carry the faulty Fanconi gene.
The newborn would then have stem cells harvested from its umbilical cord and injected into Jamie.
“I want to speed up the process for him and the best chance of finding a perfect match would be to have another child,” said Donna, who is already a mother of four.
“I have been informed in most cases such as mine, where there is more than one child, I will be declined IVF treatment as I have other children and it would be unethical to bring another child into the world,” she added.
“I cannot understand this. I can appreciate the ethics surrounding these issues but the ultimate goal is to save someone’s life, knowing treatment is available, instead of giving someone a life sentence,” stated Donna.
Those suffering from Fanconi anemia, cannot successfully combat, fatigue, bleeding, infections, or spontaneous hemorrhaging.
People with the condition are also born with skeletal abnormalities.
Those diagnosed also have an increased risk of getting cancer and other serious health problems throughout their lifetime.
The syndrome is less common in females as opposed to males and most individuals suffering from the condition only live until their mid-20s.
Regular transfusions and steroids keep Jamie’s blood counts stable. But Donna says that his body is less likely to accept the bone marrow that longer he continues with the conventional treatments.
Since a baby conceived through IVF would be a last resort option, Donna wants people to sign up to the Anthony Nolan Trust’s bone marrow register to see if they are a perfect match.
“As Jamie’s mother I want to help him. And GOSH told me that I should not lose hope,” stated Donna.
“Unfortunately, I cannot donate my bone marrow as my husband and I are carriers of the faulty Fanconi gene.”
“It has come to the point now where I just want to speed the process up on the donor search by doing something myself, which I why have contacted News Shopper.”
“If I can encourage people to consider donating blood or becoming a bone marrow donor, I would feel as if I have achieved something.”
