Girl battles back from rare blood disease

By Mark Abramson - Staff Writer

7/1/05 Six-year-old Alyssa Rivera-Galindo, of Lompoc, has grown increasingly optimistic as they have watched her battle back from the rare blood disease Moya Moya. She is scheduled to be released from Children's Hospital in Los Angeles Friday, July 8.

She has been undergoing treatment for the disease, which blocks arteries and deprives the brain of oxygen, at Children's Hospital for three months. The illness was a shock to her family because it is more prevalent among people of Asian descent and even though Alyssa's family is in the medical field, they had never heard of Moya Moya. The child's mother, Carmelita Hernandez, is an operating room technician at Lompoc Hospital.

Alyssa is battling back despite suffering multiple stokes caused by the disease. She has had two brain surgeries.

The real holiday this week for Alyssa's family will be when she gets home. They are gearing up for a big homecoming barbecue celebration a few weeks after she gets back to Lompoc, and a trip to Disneyland somewhere down the road is in the works.

The little girl has shown great improvement and resilience in a short period of time, said her grandmother, Melinda Couture. After losing movement in her right arm and legs, Alyssa has recovered to a point where she has regained use of her limbs.

"Alyssa has been remarkable through this whole ordeal," Couture said. "Alyssa can now move both her legs and she can stand and take a few steps. Within the last month, Alyssa has been able to raise her right arm.

"She rides a three-wheeler in rehab that she loves."

Alyssa has also racked up points that the hospital awards to children who take their medication, follow their physical therapy regiment and do whatever doctors prescribe to get better. Children at the hospital can use their points to buy gifts and other fun stuff. She has spent her points on a gift for her baby brother Johnathan, and toys.

But the disease's toll will be evident even after she gets out of the hospital. Alyssa will have to rely on leg braces and a walker until she regains better use of her legs, and it is unclear how much physical therapy she will have to endure.

"We still have to watch her and keep an eye on her because the first year is critical," Couture said.

Through it all, the family has shown their support for Alyssa via frequent trips to see her, and her La Honda Elementary kindergarten class kept her spirits high last school year by sending cards and keeping in touch. Couture has responded to Alyssa's classmate's kindness by sending pictures of her that documented her recovery.

Alyssa's mother, Carmelita Hernandez, has already talked to officials at La Honda Elementary about getting her enrolled in first grade in a class for children with special needs. Alyssa finished kindergarten in classes at Children's Hospital.

But watching a little girl suffer has been hard, Couture said. It appears to have affected the family more than Alyssa. The 6-year-old's smile has gone a long way toward making the family stronger.

"Not once has Alyssa ever been down," Couture said. "She says she wants to go home, but her spirits have been very high."

Alyssa's family has set up an account at Bank of America to help pay for her medical care. Anyone who wants to contribute can do so by making a donation at the bank to the Trust of Alyssa Rivera-Galindo, care of Carmelita Hernandez. A garage sale fund-raiser is being planned for sometime in August.