I wish for an American Girl experience
Faith
7
epilepsy syndrome
Faith's American Girl Wish
For most families, the occasional fever is an occasional—and often forgettable—part of life. But for Yohan and Jackie Ahn, even common childhood illnesses are a major cause for concern.
Two years ago, Jackie Ahn noticed that her daughter, Faith, seemed to have developed nystagmus (rapid, involuntary eye movements) after a recent illness. This troubling system was happening every few hours and, even though Faith was able to communicate that she felt fine, her parents noticed that she would appear more absent-minded during these episodes.
Worried, they ended up at the emergency room, where a doctor assured them that it was likely a benign tumor behind the eyes. However, he wanted to rule out the possibility of a serious life threatening condition known as FIRES.
After a spinal tap, EEG, MRI, and constant monitoring, the doctor came back the next morning with a diagnosis.
“He came back the next morning,” remembers Yohan. “He said, ‘I was wrong. It’s not a tumor, I’m suspecting it’s FIRES."
Faith’s Fight
Febrile Infection-Related Epilepsy Syndrome (FIRES) is an extremely rare condition affecting 1 out of a million children. In children with FIRES, any average fever causes inflammation in the brain tissue, which can cause seizures anywhere from hours to days later.
Unlike other types of epilepsy, FIRES doesn’t respond well to most medications, and can cause moderate to severe cognitive impairment. In many patients, FIRES can be fatal.
“She was having about 30 seizures a day,” Yohan says. “Sometimes she would get five in a row in only a few minutes. Her brain had no time to recover, which is how children end up being disabled. She was on three seizure medications and it would not slow down.”
Finally—after a week of going on a new drug—doctors were able to stop the seizures long enough to send Faith home.
“Coming home was wonderful,” Yohan recalls. “But how do you pick up the pieces right after? The first three months of recovery were really rough.”
Because of Faith’s condition, common illnesses are more than an inconvenience. The fevers triggered by her immune system can cause another seizure at any time. The Ahns found themselves exhausted by the constant vigilance required to make sure their daughter was safe.
“The Best Day Ever!”
After everything she had been through, Faith deserved something that would bring back her “sparkle.” And for Faith, any wish had to involve her beloved doll, Rose.
Faith won Rose in a bingo game during her hospital stay and she quickly became a member of the family. Faith began to dream up ideas of doll-themed hotels and her face lit up when she saw pictures of the American Girl Store.
It became obvious to everyone that a trip to the American Girl Store in New York City would be the perfect gift for Faith (and Rose)!
The family stayed at the five-star Lotte New York Palace, where she was greeted with her favorite desserts—plus some new accessories for Rose! At the American Girl store, she received a new doll named Isabella as well as some much needed pampering for both dolls.
Over the next several days, the Ahns experienced everything New York City had to offer, including a visit to the Metropolitan Museum of Art, a carriage ride around Central Park, ice skating in Rockefeller Center, and tickets to see Aladdin on Broadway.
“It really became the most perfect wish trip that could be designed,” Yohan says. “Every single day she told me, ‘This is the best day ever!’"
Hope For the Future
Faith still struggles with the symptoms of her illness and fevers are handled with extra caution. But recent testing shows that she isn’t experiencing any cognitive delays. In fact, she’s especially advanced for her age.
Faith and her sisters still dream of one day returning to New York City, but for now, they are still flying high with the memories of their wish trip.
“It gave us the much-needed time to enjoy each other,” says Yohan. “It was a huge mental break. It was so awesome to see the sparkle in her eye.”
Like most children who are living with a critical illness, Faith is used to hearing the words “no” and “not yet.” Her wish trip gave Faith the freedom to hear “yes”! What started out as a shopping trip soon became a celebration of survival where the sky was the limit. More importantly, it was a symbol of hope for the future.
If you’re looking for a way to help us grant the wishes of every eligible child, contact Make-A-Wish Central and Northern Florida® today.