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To know Jenna is to know love

February 29, 2012

Jenna is 11 years old, but wise beyond her years. She loves fiercely and unconditionally, because she has been loved fiercely and unconditionally. Jenna has fought for her life many times, but she lives each day in peace, full of kindness and laughter. She is surrounded by the love of her devoted family: her mom Kristi, dad Bruce and older brother Jared. Together, they have faced challenges they never expected.

Their struggle began on March 24th, 2000, the day Jenna was born. She was born at Arnold Palmer Hospital, six weeks early weighing 2 lbs. 14 oz. After spending eighteen days in the neonatal intensive care unit and weighing only 3 lbs. 6 oz., Jenna went home with her family.

Over the next several months, though, it became clear that something wasn’t right. Jenna was sick often, failed to gain weight and endured frequent hospitalizations due to pneumonia and other infections. After seeing several specialists, Jenna was diagnosed with an immune disorder. Over time her condition worsened, and she was diagnosed with a disease known as common variable immunodeficiency.

Jenna’s disease means that her body can’t fight infections. Bacteria or viruses that the average person could easily overcome are life-threatening to Jenna, and she requires therapies to build her immune system.

Two years ago, Jenna began to experience new symptoms. After visits with more specialists, Jenna gained a list of new diagnoses: juvenile rheumatoid arthritis, sarcoidosis, Hashimoto’s thyroiditis, asthma and seizures. Jenna’s weak immune system has trouble fighting common bacteria and viruses, but it also mistakenly attacks different parts of her body. Her treatment has become a delicate balance of building her immune system to fight foreign substances, while suppressing her immune system from attacking her own body. Jenna requires 32 medications every day to keep her going. But, you wouldn’t know it to look at her.

Despite her medical issues, Jenna is a straight A student and an award-winning black belt in karate. She enjoys Girl Scouts and summer camp, and even though she is now home-schooled, she still enjoys sleepovers and play-dates with her girlfriends. Perhaps nothing defines Jenna as well as her love of animals. Her pets are a rag-tag group that includes a hairless hamster named Navy, a ball python named Scout, Uncle Fester the chameleon, Moo-moo the cat (whom she adopted after raising funds for the Humane Society), two dogs: Sadie and Chewy, a fish named Nemo and a bird named Bass.

Jenna’s love extends to people, too. She has a kind, gentle way about her that seems to draw people close, and she has never met a stranger. When in public, Jenna often wears a mask to protect her from germs. And, even though much of her face is covered, her eyes sparkle with the sweetness of a smile hidden beneath.

Perhaps Jenna’s capacity for love comes from the incredible bond shared by her family. Throughout Jenna’s many hospitalizations, Kristi and Bruce have stood alongside Jenna as she fought for her life. Each challenge has brought them closer together. Yet, they never expected to be fighting for their own lives as well.

In early 2006, Bruce became extremely ill, and unable to determine the cause, they traveled to specialists around the country in search of a diagnosis.

Bruce was diagnosed with a very rare blood disease called acquired pure megakaryocytic aplasia. At that time, only 32 others had been diagnosed with this disease, and the outlook was grim. But, Bruce and Kristi chose to fight his disease aggressively, and after undergoing nine months of intensive treatment, Bruce’s disease went into remission on October 24, 2006.

Because of his illness, Bruce has been unable to work. Jared, now 19, works full-time and is looking forward to entering the Police Academy, but Kristi’s job as a nurse at Arnold Palmer Hospital has provided the sole income for their family. Kristi, noting that most of her paycheck goes to provide medication and copays, feels the strain.

However, in July of last year Kristi found herself in need of medical care as well. On the Fourth of July, she was rushed to the emergency room with an intense headache, blurred vision and slurred speech. Her doctors determined that she had increased pressure on her brain and needed immediate, life-saving surgery. While recuperating in the hospital, Kristi completed her coursework needed to obtain her Master’s degree in nursing education, and four days after her release from the hospital, she walked down the aisle to receive her diploma.

After 72 days of recovery, Kristi went back to work, but the family still struggled under the financial strain of the unexpected illness. By December, they had begun to recover financially when Jenna was hospitalized. She suffered severe complications from a viral illness that nearly cost her life. Having exhausted their savings and paid time away from work, their financial situation has become dire.

Kristi promises, though, that she will keep fighting every day. She may not know where the money for rent or groceries will come from, but she says, “I’m alive. And my family’s alive. If I don’t fight for my family, then who will fight for them?”

Kristi credits the unwavering support of friends, family and coworkers that have helped their family through these difficult times. She also says:

“My patients keep me going. Kids don’t know the words ‘I can’t’ or ‘I won’t’. Kids have an amazing spirit about them. If it weren’t for what I do, I don’t think I would have fought as hard to get through this or push my husband to do the same.

We have kids come in, and they find out they are cancer-free. If one doctor would have just said, ‘There’s nothing else we can do,’ that child wouldn’t be here. But, our doctors don’t give up. Seeing those amazing journeys inspires me to fight harder for what I have.”

For Jenna and Kristi and their entire family, it is hope that keeps them going. Kristi says of Jenna, “she’s going to do great things in the world.” But, those of us that know them think that she already has.

This family has seen how fragile life really is, and they love each other each day as if it’s their last. In their struggle, they have taught us how to love, too: deeply, unconditionally and without fear.

For that, we will always be grateful.