Bush visit raises girl’s spirits

In Room 7 of the Ronald McDonald House, there will soon hang a photo of President George W. Bush with one of the residents, 14-year-old Isabel Maria Bermeo. For the organization, it will be a picture of prestige. For the girl suffering from cystic fibrosis and in need of a lung transplant, it will be a picture of hope.

No president had ever visited with a patient of the Spokane children’s center, but all that changed last week when Bush met privately with Isabel and her mother for about 15 minutes before speaking at a dinner. Isabel knew she might have an opportunity to meet with the president, and she prepared a letter asking for his help.

“I hope that he will answer me,” she said, taking in oxygen from a machine that helps her breathe. “He told me he wouldn’t forget to read it. I hope he will call me.”

On April 7, Isabel was placed on a waiting list for the transplant that will take place in Seattle. State Medicaid will cover Isabel’s transplant, but she hopes Bush can aid her in getting a Social Security number – something she’s without. Isabel was born in San Diego but taken to Ecuador before being properly registered, leaving her with only a visa. Upon receiving a Social Security number, Isabel will be eligible for benefits such as food and housing.

The University of Washington medical team has performed 21 lung transplants since the first of the year. Ronald McDonald House Executive Director Mike Forness said Isabel desperately needs to be among the next.

“I’ve been told by the medical professionals working with her that she may have celebrated her last Christmas with us … if she doesn’t get a lung transplant soon,” Forness said. Isabel is the only person at the house awaiting a transplant.

Statistical anomaly

Cystic fibrosis, commonly known as CF, is a genetic disorder that affects the respiratory, digestive and reproductive systems. CF is inherited through DNA, and it alters the way water and salt move through the body’s cells, particularly in the lungs and pancreas.

Isabel is one of about 30,000 Americans living with the disorder, which strikes at birth and significantly shortens lives. Isabel is somewhat of a statistical anomaly; according to a published report, ethnic minorities are 3.5 times less likely to get the disorder than whites. Only 38.7 percent of Americans with the disorder are 18 years of age or older, according to the Cystic Fibrosis Foundation. Median age of death is 32.

Isabel has her days filled with respiratory therapy, physical therapy and doctors’ appointments. Tuesday was spent in Seattle, where she met with the doctors who will perform the three-hour operation when a match is found. Isabel visits Seattle regularly, and she’ll need to move there for post-op treatment.

Her cousin, Enrigue Ditto, and his wife, Guzin, are helping spread the word about Isabel’s situation. They’ve established a campaign with the National Transplant Assistance Fund to help with expected costs.

“The goal is they don’t have a place to live; they want to live in an apartment,” Guzin Ditto said.

A memorable meeting

Inside a meeting room at the Convention Center on June 17, Isabel sat in a wheelchair as she conversed with the president, hoping he could be of some assistance. Isabel had been worried her mother would be left out of the conversation – she speaks only Spanish – but both were surprised when they were greeted by Bush in their mother tongue. Bush learned to speak Spanish in Texas, Isabel said, and the president did just fine.

“The only problem was the verbs,” she said.

The meeting was months in the making. Isabel mentioned to Forness in January that she’d like to meet the president. Forness relayed the message to Pat West, who founded the local house and is friends with Rep. George Nethercutt. Nethercutt, a Senate candidate, passed the information to the White House, and last week the efforts came to fruition when Bush was in town to campaign for the Republican.

During the meeting, Bush gave Isabel a signed hand-written note, which reads: “To Isabel, my friend, best wishes always.” Isabel’s mother, who goes by the same name, received a similar note written in Spanish. Bush also gave Isabel a pin and a box of presidential M&Ms. At the end of the meeting, the president gave her a “big hug” and kissed her three times, smack dab in the middle of the forehead.

The president was soon one-upped, however, by a member of his security team. As Isabel sat in her wheel chair, a man came over and gave her a medallion-sized coin from the secret service, which turned out to be her favorite gift of all.

“I like this coin,” she said while holding it in her hand. “I don’t know why. Maybe because it’s heavy.”

Waiting for the call

Back in October, Isabel moved from Florida to the Spokane Ronald McDonald House on the advice of doctors. Isabel said she likes it there. It’s close to the hospital and it feels like home.

Despite that, Isabel is eager to get the organ transplant. She won’t have to take nearly as many medications as she does now. She’ll be able to go to high school with other students. Maybe she’ll even pursue a hobby.

“I’d like to take some dancing classes,” Isabel said. “Whatever. Something. Maybe like Britney Spears or Usher.”

At some point, Isabel’s mother will receive a phone call or a page from doctors, telling her that a match has been made. Within three hours, Isabel will be in Seattle, beginning preparation for what is a nine-hour process.

The future is still uncertain, however. Isabel must first find a match. She must then go under the knife. And then, she needs to survive. Statistics show that more than 1 in 5 individuals do not live longer than a year following surgery.

But for a 14-year-old, surgery and statistics aren’t things to think about.

“No,” she said. “I just want my lungs.”