Girl fights rare blood disease
By Mark Abramson - Staff Writer


4/29/05 Alyssa Marie Rivera-Galindo is in the biggest fight of her young life - a battle against a rare blood disease called Moya Moya.

Moya Moya is defined as blocked arteries to the brain as they go in to the skull. The blockage deprives the brain of oxygen and blood, which can cause strokes and seizures.

Since symptoms of the disease appeared in early April, Rivera-Galindo, 6, of Lompoc, has suffered multiple strokes and has had two brain surgeries to treat the disease. Her first operation was April 13, the day before her birthday. The most recent surgery was April 22.

Moya Moya has caused Rivera-Galindo to lose movement in her right arm and left leg, and it impeded her speech during the strokes.

The severity of the condition required her to be moved from Lompoc Hospital to Children's Hospital in Los Angeles. Her mother, Carmelita Hernandez, has been at her bedside ever since she was moved to Los Angeles, and the little girl's father, Joey Galindo, has traveled back and forth between town and the hospital since she was admitted.

Rivera-Galindo's treatment includes physical therapy twice a day for her joints, and she will likely be on blood thinners the rest of her life.

"It's kind of hard, she's a very active little girl," said Melinda Couture, Rivera-Galindo's grandmother. "This is very hard for her because she's trying to understand. You see a lot of fear in Alyssa.

"The next six to eight months will be critical. (Doctors) said after the first year she should go back to normal life if she doesn't suffer any setbacks."

Couture said the news about Rivera-Galindo's condition shocked her and her family. They never heard of Moya Moya even though they have several years of experience in medicine. Couture is a former certified nursing assistant at Lompoc Hospital, and Hernandez is an operating room technician at the hospital.

The family has educated themselves about the disease via the Internet and by talking to doctors, Couture said. The disease is more common among Asians.

"There is a lot of support," Couture said. "Her teacher, Patti Balcena's class has sent Alyssa a lot of cards, and they sent gifts. That helps."

Rivera-Galindo's kindergarten teacher at La Honda Elementary School has also kept tabs on how her student is doing.

"For me it's been an emotional roller coaster because she's my husband's second cousin," Balcena said. "We have been hoping and praying. (The class) sent her get well cards."

The family is trying to raise money to pay for the treatment in a number of ways. An account at Bank of America - the Trust of Alyssa Rivera-Galindo, care of Carmelita Hernandez - has been set up to take contributions; plans are in the works to have at least one garage sale with the proceeds going to pay medical bills; and Couture said she plans to talk to officials at the Elks Lodge, which she is a member of, about having a fund-raiser. An Internet site with updates on how Rivera-Galindo is doing has also been set up - http://www.geocities.com/deannamburns/Alyssa_Marie.html.

"It's stressful and emotional," Balcena said. "She's a fighter. She's a strong little girl. We think about her every day."

The entire article can be found here: http://www.lompocrecord.com/articles/2005/04/28/news/news04.txt

Thanks for posting this DJ!  I've never heard of MM being refered to as a blood disease?  Has anyone else?  I've always refered to it a neurological or brain disorder...

-Shari

I was just told it was a disease/disorder that attacks the arteries of the brain. No one ever was more specific than that with me.

I think the New York Times article was more realistic than this one plus it says "after a year she should go back to normal !!!"  Anyway...it'll all get out eventually then they'll find there's more that have MM than realized.   Hope her family find their way to MM.com.

CarasMOM

I am just thankful that she was correctly diagnosed and that they were able to do the surgerys to send her on her way to recovery :).  I will pray that through the therapy she will be up and running around soon.

I've never heard of it referred to as a blood disease, either.  The doctors did test Daphne's blood after her strokes, to see if she had any factors that would predispose her to clotting (all came back normal).   I was told moyamoya was a vascular disease, which makes more sense to me.  (the same pathology that caused Daphne's moyamoya is thought to have caused her heart defect - which is a narrowing of the aorta).

Everyone is correct.  Moyamoya is NOT a blood disease, rather a vascular disease.  One of the simple mistakes a reporter who has never heard of moyamoya could make.

Too bad his research wasn't very in-depth but overall, it wasn't a bad story.  More about a sick girl than a rare disease the way I read it.

My  [smiley=twocents.gif]

I agree that the article was good but mainly about a sick little girl. wish reporters would do more research when they writing articles. I hope all works out for that little girl. Thanks Dj for posting the article!

Christy

The way I see is that the disease MM was mentioned and put out there for someone to see. More than before , it is a shame it was not more in depth about the disease but just mentioning it is at least a start, along with the New York Times.
                              Nancy