Jennifer Pollard is Looking for a Chance
This Sandpoint Woman Battling A Rare Disease Can Use Your Help.
Snow falling, temperature dropping, people shopping... Christmas is in the air. Most families are squirreling away presents in the backs of closets or disguising them in brightly colored holiday wrapping, hoping to create surprise and joy on a loved one’s face come Christmas morning. One Sandpoint family, however, is approaching the holiday season—and the new year just beyond it—hoping beyond hope for a different surprise: the chance for Jennifer Pollard, wife and mother, to have a chance to live and love into the new year and beyond.
Jennifer, you see, has MonoMAC, an extraordinarily rare (less than 30 patients worldwide) immunodeficiency resulting from a genetic defect, and her health is deteriorating. The family is pinning their hopes on an experimental bone marrow transplant in late January at the National Institutes of Health in Bethesda, Maryland, to stop the progress of the disease in its tracks. But first, they have to figure out how to come up with close to $200,000.
The story of how they got to this point is one of luck—bad luck. Jennifer happens to be one of 30 people in the world so far identified with a genetic abnormality on the gata2 gene, which encodes for the GATA-2 protein, a master regulator that works to control the blood cell maturation process. And what that mouthful means is that Jennifer, because of this abnormality, has a poorly functioning immune system. She is prone to recurring, life-threatening infections—viral, bacterial and fungal.
The disease first showed its face when Jennifer was nine but it would take over three decades to find out what it was, and during most of that time, Jennifer did her best to live a normal life, despite being hospitalized 5 to 9 times a year for infections, not knowing the defect that lurked in her genes. She married Ray Pollard, a love match that’s obvious to anyone who hears him talk about her, a quarter century ago, and the pair adopted two girls, Lauren and Makenna. Jen was on the professional fast track with a pharmaceutical company, while Ray worked for Coldwater Creek, and owned a window washing business. They bought a house in Sandpoint where Jennifer enjoyed running, swimming, and playing the French horn. (Her mother, Anita Price, has guided the musical aspirations of students all over Bonner County.) They even had insurance.
Running and swimming are now things of the past, and so are the jobs. Jennifer is unable to be out of bed longer than four hours a day, and Ray is her full-time caregiver. The French horn, and Jennifer’s love of music, is threatened by growing hearing loss. And the house was lost to what Ray describes as “overwhelming medical debt,” as the insurance will pay nothing in relation to Jennifer’s rare disease. The girls and this family’s love are what they are left with, and if love can find a way, Ray’s love for Jennifer (and hers for him) will help them raise the money they now need.
This part of the story—the hard part—began a few years ago when a fungal infection kept Jennifer hospitalized for five weeks. It wasn’t her first hospital stay—the family estimates she’s spent over 3,000 days of her life in the hospital—but this time, one of her doctors had heard about MonoMAC (the genetic defect was only recently discovered) in a lecture and followed up his suspicions with some genetic tests. And then they called Jennifer with the results.
“That phone call was the two extremes,” Ray offered. “There was the high of diagnosis—to finally know what it was that was causing these problems. But the next sentence was there is no cure. That feeling was pretty low.” Jennifer, Ray shares, has days where she wishes a diagnosis had never been made. “In some ways, it was easier to just blindly fight.”
Was her doctor’s intuition a lucky break? Only if luck is a trickster. Because MonoMAC is so rare, understanding the disease and its progress is in its infancy. That means there is no diagnosis “code” for insurance purposes, and treatment—the upcoming bone marrow transplant—is deemed experimental. Which translates to no coverage from the insurance company.
“Of course it makes me furious,” said Ray. “Furious and frustrated. Jennifer is dying, and this bone marrow transplant offers her a chance. And instead of getting on with it, we’re trying to figure out how to pay for it. Basically, it’s putting a price tag on my wife.”
The $185,000 Ray is trying to raise is only a portion of the cost of the procedure, because National Institutes of Health will pay for the actual transplant operation. What they won’t pay for, however, carries that large price tag: Jennifer will have to remain in Bethesda for 150 days—and maybe longer if there are complications—after the bone marrow transplant; she is required to have a full time caregiver at her side (Ray); on top of those living expenses, the pair must still provide for their two daughters, who will remain in Sandpoint; there are costly medications to prevent Jennifer’s body from rejecting the donated bone marrow (which is coming from her brother) and the costs involved in obtaining the donation. Social workers advised them on the amount to raise, and they still have a long way to go.
And time is pressing. Jennifer’s condition is causing severe lymphedema (fluid retention and swelling) which increases the risk of infection. She recently had to have a finger amputated due to an abnormal growth that caused a bone infection; five other fingers are also affected. She has run through the gamut of antibiotics; for the last five years she has been receiving daily intravenous infusions of a ‘last line of defense’ antibiotic; should any of her infections develop a resistance to this antibiotic, there are few options left for treatment. Her health continues to worsen, and this concern about their continued ability to fight her infections is what has her doctors insisting that the bone marrow transplant must take place now, and not later. And if they can’t raise the money to pay for it? “Then the bone marrow transplant won’t happen,” said Ray. “And Jennifer’s health will continue to decline until she gets an infection that kills her.”
That is also why Jennifer’s brother Rob is the donor for her treatment, despite the fact that he is only a half match. Earlier this year Ray and Jennifer’s friends helped to organize cheek swab drives, encouraging people to register with the Bone Marrow Registry as donors; over 300 people did so during concerts at the Festival at Sandpoint this year. But no one, so far, has come closer than half of the human leucocyte antigen (HLA) markers that determine a match between donor and patient. A transplant with only a half match is less than optimal—and yet another sign of how little time is left for Jennifer to undergo this procedure.
While the transplant is experimental, there’s reason for hope: John Condon, a young man also diagnosed with MonoMAC, is now six months beyond his transplant surgery and, he writes, “My recovery is doing very well.” So well that he says there are days he has to remember that he is still sick, and must take his anti-rejection medications.
“Snow is falling and I find it absolutely beautiful—this first snowfall used to excite me—but today it fills me with fear,” Jennifer wrote just before Thanksgiving on her blog at JenniferPricePollard.com website. “In my last blog entry I stated, “when the snow begins to fall, I will face the most difficult decision of my life”
She goes on to quote Gen. Omar Bradley, who said, “... we are given one life and the decision is ours whether to wait for circumstances to make up our mind, or whether to act, and in acting, to live.
“I’d like people to know my wife,” Ray said. “She is one of the most amazing people I’ve ever met. I say she has a warrior will—she just constantly fights this and never gives up.” Ray is no less a warrior himself. He is Jennifer’s primary caregiver, managing her ports and IV antibiotics, overseeing the pneumatic sleeves she wears on her legs to circulate lymph fluid through her system, trying to slow the progress of the lymphedema that’s moving toward her abdomen. He continues to try to draw attention to Jennifer’s plight in an effort to enlist fellow warriors who will help fund their battle, or who will at least share the story with others who might be able to help. He maintains a Facebook page (FriendsofJennifer) an online site where people can donate (gofundme.com/Lets-Save-Jen), a website (jenniferpricepollard.com/) has put together two beautiful videos to tell Jennifer’s story.
Only half of the known MonoMAC patients have lived beyond the age of 35, a deadline Jennifer has already passed by a decade, an indicator, perhaps, of her will to live. Most MonoMAC patients also develop leukemia, something Jennifer has also managed to avoid to this point. The connection between MonoMAC and leukemia, however, is so profound that doctors at National Institutes of Health believe in treating patients like Jennifer, they may begin to learn how to cure this cancer, which kills over 23,000 people every year.
A friend of Jennifer’s wrote eloquently the following call, to be used on Jennifer’s behalf: “Jennifer’s amazing spirit, love for life and her family have helped sustain her and continue to give her strength in the face of these immense challenges. She is grateful for the emotional support she is receiving, but she is now greatly in need of financial assistance. We can’t fix her body or take on any of her pain—not even for a moment—but we can help her and her family shoulder the very stressful financial burden. The further we spread the word through Facebook, e-mail, or Twitter, the more money we can raise for Jennifer.
The snow is falling and Christmas lights are twinkling—hand in hand with the holidays, Jennifer’s decision time has arrived. While her warrior will may work wonders against this rare, little understood disease, what it cannot do is create cash out of nothing. That is the reality of our medical system today. You only get what you can pay for.
If you would like to help Jennifer in her battle, would like to extend your hand in communal support, please see the information below for ways in which you can donate. No amount of money is too small to give, so that the new year may see Jennifer battling against MonoMAC with a powerful new weapon—her brother’s bone marrow. All she asks is for a chance.
HOW YOU CAN HELP
You can donate online at www.gofundme.com/Lets-Save-Jen using PayPal or a major credit card.
For a tax deductible donation, send a check to the Bone Marrow Foundation with Jennifer Pollard’s name on the check. Mail to: The Bone Marrow Foundation, 515 Madison Ave. Suite 1130, New York, New York 10022.
Visit www.FriendsofJennifer.com and donate using the button on the home page.
You can also purchase raffle tickets for this new Martin HD-28 Acoustic Guitar (includes a fully fitted case! - see below) The guitar is valued at $2,700. Tickets are available at $20 for one, $50 for 3 or a donation of your choice with ticket quantity based on the above. Purchase your ticket by making a donation at www.gofundme.com/Lets-Save-Jen. You will receive an email confirmation with your unique ticket numbers. The drawing will be held prior to Christmas.