Sydni Lee is 16-years-old. In February, she was a varsity cheerleader at Payson High School, a member of high school drama club, a scholar, a fun-loving teenager. In March she was diagnosed with Familial Hemophagocytic Lymphohistiocytosis (Familial HLH), a rare disorder of the immune system, affecting one in 1.2 million people. The treatment for Familial HLH is like leukemia – chemotherapy to knock out the damaged immune system, then a bone marrow transplant to replace it.
But that’s a simple version of a complex story. Sydni endured thirteen weeks of chemo, spinal taps, CT scans and blood transfusions. There was difficulty finding a perfect donor match, and difficulty with the bone marrow transplant. After the transplant in July, she was in isolation for 43 days and suffered a host of painful complications. Migraines. Mouth sores. Fevers. Inability to eat, drink or talk. In all, a six-month stay at the Ronald McDonald House, along with her mom, Geri,
But Sydni is not her disease. She is a young woman whose spirit is soaring, in spite of this wretched disease. Seriously, she wears a bracelet, “Find Joy in the Journey.”
When finding a bone marrow donor became difficult, she created her own video, which inspired 500 more people to sign up for the bone marrow registry.
After the transplant, when eating was difficult, her mom, Geri, said, “Faith and humor were her main staples.”
In the hospital one day, she took out her ukulele and joined a duo of folk singers, entertaining the staff and teaching songs to toddlers with cancer. An impromptu, joyful concert while Sydni and the young patients were hooked up to IV poles and wearing surgical masks. The song?
One Day by Matisyahu
Sometimes in my tears I drown
But I never let it get me down
So when negativity surrounds
I know some day it´ll all turn around
“Sydni never complains,” Geri says. “I’ve been traumatized by what I’ve seen my child go through, but I have never heard her complain.”
Since they’ve spent so much time at the Ronald McDonald House, we’ve all grown to love Sydni and Geri. And enjoyed some Friday afternoon concerts.
“Staying at the Ronald McDonald House allowed us to use our funds to save our home”, Geri said. “I would have lost everything. I can’t imagine where we would be financially, mentally, emotionally without being able to stay at the Ronald McDonald House. To me, it’s not [just] the Ronald McDonald House, it’s a home.”
While there’s no story or no family that’s just like Sydni’s, there are hundreds of families that need the Ronald McDonald House each year. More than 650 families called this House their home last year. You help create this wonderful “home-away-from-home.” All families stay here for free because of your past support.
Remember when you give to Ronald McDonald House Charities of Southern Arizona, every dollar stays here in Tucson to help families through one of the most stressful times of their life.
Sydni and her mom are in Payson now, more than they are Tucson. But they still stay with us for a few days at a time when they are here for follow-up care.
“Now we’re both in good spirits, but I’m definitely ready for the next chapter,” Geri said.
