Even though Hannah Ostrea died when she was 3, her family plans to make sure her name and memory live on through the Little Miss Hannah Foundation, which offers resources to families with children of life-limiting rare diseases.
"I want us to be to rare diseases what Susan G. Komen is to breast cancer," said Carrie Ostrea, Hannah's mother and a Henderson resident. "(With Susan G. Komen) you know you have resources. We want to be the bridge that connects parents from the beginning to the end."
The foundation's official launch is scheduled from 5:30 to 9 p.m. July 25 at The District at Green Valley Ranch.
"It would have been Hannah's fourth birthday," Ostrea said.
The event, "Rainbows to the Sky," is scheduled to be a fundraiser. The family also hopes to create awareness for the organization and rare childhood diseases, such as Gaucher disease, from which Hannah suffered.
The family-friendly event is set to include music, activities, raffles and a balloon release to honor the memories of those who have died.
Ostrea's goal is to raise $10,000, which should be raised through the raffle.
"I think to be comfortable, that's a good goal," she said.
When Ostrea and Robert, Hannah's dad, married 15 years ago, they discovered they were unable to have children.
"We went through fertility treatments," Carrie said. "Had four or five miscarriages."
To start their family, the couple decided to adopt - first Ethan, then Abigail. About four years ago, when the family was living in Texas, Carrie started getting sick.
"It was (Abigail) who said maybe I was pregnant," Carrie said. "(My husband and I) looked at each other and were like, 'That's not possible. We are infertile.' "
Carrie went to her doctor, and sure enough, she was 10 weeks pregnant.
"We did the (amniocentesis)," Carrie said. "We did genetic testing for Jewish diseases because I'm Jewish. We came back negative for Down syndrome and other chromosomal disorders. We found out we were having a girl."
Hannah - or Little Miss Hannah as the family called her affectionately - was born July 25, 2008, weighing 6 pounds and 11 ounces.
"We had one good night without any medical issues," Carrie said.
The next night, Carrie, who was half asleep, heard nurses talking about Hannah.
"She said, 'This baby doesn't need her kidney,' " Carrie said. "I just started screaming, asking what they were talking about."
The hospital began to run tests on Hannah and discovered that her spleen was enlarged. Hannah spent the next few weeks in the neonatal intensive care unit as the doctors tried to find answers.
After Hannah was released, still with no clue to her ailment, Carrie met with specialist after specialist until a diagnosis was reached: Hannah suffered from neuronopathic Gaucher disease, a life-limiting genetic metabolic disease.
Hannah was one of about 50 current cases in the country, Carrie said.
"She was either type 2 or type 3, doctors said," Carrie said. "They said she wouldn't make it past nine months. She wouldn't even see her first birthday."
That answer did not settle well with the Ostreas. They sought every expert, researcher and scientist in the country to find answers and perhaps a cure.
Even after consulting with a top neurosurgeon in Texas who specialized in Gaucher disease, the family sent brain cells to researchers in Canada and Israel.
But all news was bleak.
The one thing the family did learn was that even though the specialists they had contacted were dedicated to researching Gaucher disease, there was little work being put toward the disease and even less funding.
"Parkinson's gets about $63 million a year (in funding)," Carrie said. "Gaucher has gotten about $1.5 million in 20 years."
Despite the cruel course the disease would run on her body, Hannah survived past her first birthday and even on to her second and third.
"She reached the development of about 20 months old," Carrie said. "She would chase after the kids."
But soon, Hannah started to decline, and most of the progress she had made began to fade.
"She could no longer roll over," Carrie said. "She couldn't really interact anymore, which was weird because she loved to laugh and smile and play. The last year was really hard."
The family went to Disney World as part of a Make-A-Wish Foundation trip.
"She loved Mickey and Minnie." Carrie said. "She got to meet them three times and just lit up."
Around September 2011, Hannah's condition worsened. According to new MRI scans, her brain matter had deteriorated significantly from where it was the previous year.
"The doctors gave us two options," Carrie said.
Hannah could either undergo brain drilling to help relieve the pain or be put into a medically induced coma. Seeing that Hannah was in pain and that the brain drilling option was experimental, the family decided to take her home.
First, they met with Nathan Adelson Hospice's pediatric sector. Hannah stayed at the hospice for three days until she was able to come home.
"She stayed with us for seven weeks," Carrie said. "She made it through all our birthdays and Thanksgiving."
On Dec. 4, 2011, with all her family in the house, Hannah died.
"You can't say you have a plan for this," Carrie said. "But she was home, surrounded by everyone who loved her with no machines. It was the right way for it to happen."
Organizing the event and creating the foundation has been therapeutic, Carrie said.
"It keeps her at the forefront of our minds," Robert said.
In addition to offering awareness of rare diseases such as Gaucher disease and connecting families to resources, the foundation plans to offer services for families, in particular siblings of children with life-limiting disorders.
"There are organizations and agencies for the child," Robert said. "But resources for the siblings or the parents are few and far between."
The Ostreas' goal is to get the foundation running in Southern Nevada, start making progress in Northern Nevada and Utah by the end of 2013 and eventually take it nationwide.
"We just want to help," Carrie said. "We want to do something that makes a difference in Hannah's name."
For more information, visit littlemisshannah.org.
Contact Henderson/Anthem View reporter Michael Lyle at firstname.lastname@example.org or 387-5201.