"It was kind of like tunnel vision. If we don't do this, she doesn't have a chance," Green-Small said. "And that was something we couldn't accept." "It was that or not have her at all," Dyvon Small said. Dolores Barber, Dyvon's mother, wasn't so sure about the decision. The Hartford woman questioned whether her son and daughter-in-law might be ready to face the reality of caring for a severely disabled child. "I think they really did not know what they were getting into," she said.
For most of the past five months, the Smalls have lived in North Carolina caring for Jashaia. Barber cares for Dyvon's 12-year-old son, and Nadine's mother, Maggie Anderson of Hartford, is taking care of the couple's two girls as well as Nadine's 12-year-old son. The Smalls have been helped by Dyvon's employer, Waste Management Inc., which negotiated with their insurance carrier to help pick up the cost of the procedure, which the Smalls say has run to about $600,000. Even with the insurance coverage, the Smalls have spent all of their savings and Dyvon Small's retirement account to be with Jashaia. The couple also know now that the cord-blood transplant will not bring back the vivacious baby they knew.
Jashaia barely survived a bout with graft-vs.-host disease, in which the immune system attempts to kill off foreign cells from a transplant. She has had trouble eating and has had to have fluid drained from her lungs. The condition has kept her in and out of the hospital for weeks. It will take doctors as much as a year to know whether the stem cells in the cord blood have begun to block the disease, Parikh said. In the months before the stem cells start working, the neurological damage Jashaia suffers will be irreversible. No matter what the outcome, doctors say they will learn from Jashaia. Is it too late to try cord-blood stem-cell transplants in Tay-Sachs patients at 4 years or 2 years or even 1 year? Duke researchers say they don't know.
"Perhaps we can do a transplant in utero," Parikh said. "I think we need to try to define parameters. How much time do we have?" When Green-Small allows herself to feel optimism, she hopes her daughter will at least retain ability to express herself, an ability she has always had, even though Tay-Sachs robbed her of most of her ability to use words. Green-Small has no doubt the transplant was the right thing to do. "I'll keep fighting for her because she can't fight for herself," she said. "She is the greatest gift I have ever received."
Thank you for your faithfulness in posting these articles. You're doing a great thing, and may you be rewarded richly!
This little girl is blessed to have such caring parents.
Thank you for posting this.
Oh, how sad : ( I sent up a prayer, and anyone reading the story might want to send up one too.
I was in a therapy training group with a woman whose child died at home at age 4 after four harrowing year of decline. We were learning techniques of processing grief, and this poor woman's agony was wrenching.
I just don't understand the reluctance to use embryos that are going to be discarded anyway.
Tay-Sachs is a real world example of a mutation, i.e. one of those changes which evolutionists are forever telling us allowed us to rise above being monkeys.
Prayers up for this precious little girl and for her family. I know too well the pain of trying to get help for my son and the best that medical science was able to offer failing.
Poor little tyke. Prayers for her and her family.