Nora’s Library: Parents use memorial fund to create an oasis for other children struggling with illness

Bostrom Family
SVCF donors Claire McCormack and Thomas Boström with their daughter, Nora.

In her short, almost-four-years of life, Nora Thelma Boström learned quite a few things:

  • It is way more fun to walk -- and chase dogs -- than to ride in a stroller.
  • Dancing is an extraordinary form of self-expression.
  • Biking fast, downhill, is the only way to bike.
  • Even if one spends much, much too much time in a hospital, a library full of favorite books is a wonderful place to spend hours of quiet, special time with friends like Curious George, Miss Spider or Noisy Nora.

Claire McCormack and Thomas Boström lost Nora, their first child, to hospital-acquired infections nearly four years ago. But they are honoring her vibrant memory by bringing other families who are coping with chronic illness the joy of a colorful and cozy children’s library, which will be created at Valley Medical Center’s planned Women’s and Children’s Center.

McCormack and Boström created the Nora Thelma Boström Foundation, a memorial fund at Silicon Valley Community Foundation, to help build a library for children like Nora, who spent nearly one fourth of her life hospitalized with complications from myriad, serious health issues.

“When your child dies, or anyone dies, it's so final. And that's terrible,” said McCormack. “We immediately thought of creating a foundation, because we wanted to think of something to give Nora a way to live on.”

Nora
Nora’s parents created the Nora Thelma Boström Foundation at SVCF.

They initially thought they might start a foundation of their own, with money their generous family and friends wanted to give to honor Nora’s memory.

But they quickly learned that creating a foundation requires a lot of work: numerous contracts, tax filings and acknowledgements, an online-giving portal, and knowledge of federal and state laws for every state from which donations might flow.

So a law partner of Claire’s recommended they seek out Silicon Valley Community Foundation, which has expertise in just such work.

Their philanthropy advisor at SVCF guided them on the ins and outs of how to fundraise for their memorial fund, including tips like identifying influential “ambassadors” to help get the word out.

Their adviser also helped validate the mission of the fund.

 “A lot of people focus on funding research, but you need a lot of money to really make any kind of difference” that way, said McCormack. “So we thought we need to focus on what we know best, which is the actual day-to-day, patient experience.”

Nora’s health problems began when McCormack, a lawyer, had complications early in her pregnancy. The complications resulted in poor lung development for Nora. At six months old, baby Nora was diagnosed with pulmonary hypertension -- the youngest patient Nora’s medical team had ever seen with the ailment, which is characterized by abnormally high blood pressure in the lungs.

In her short life, Nora battled numerous ailments -- bowel perforation, feeding problems, high blood pressure and more. At age 3 she had to have a central line put into her body to deliver her medications. The line became infected multiple times while she was hospitalized.

The ordeal was not helped by the hospital environs, McCormack recalls.

“Most adults have not spent a significant amount of time in the hospital. When they do, they hate it,” she said. “Now try to put yourself in the shoes of a 3-year-old child, who doesn't understand and has no control – there are strangers around constantly, you are constantly poked and prodded, there’s constant noise, beeping, beeping. People bursting into the room. And the whole time, you're sick,” she said.

The library at Lucile Packard Children’s Hospital was one of the few islands of calm for Nora. It was only open during certain hours, because it had a volunteer librarian who was there to help children “check out” their favorite books -- something Nora adored. It was a space where beleaguered families could read together, or teens could settle in with their music.

The couple originally thought they’d create a library closer to their home on the Peninsula. But they learned from their SVCF philanthropy advisor that Valley Medical Center, whose expansion has been underway for several years, was seeking funders for a new Women’s and Children’s Center with the help of the VMC Foundation.  It turned out to be a perfect fit.

“First of all, they're a public hospital. So, of course they serve a population of kids who might not have a lot of access to books and libraries and that kind of thing. So, that's one thing that was appealing to us,” said McCormack. “Secondly, they have a lot of kids who are there for long-term rehab, including some who get surgery elsewhere. That was something also that we felt was just a great mix.”

The new library in her honor will feature the best features of the library that Nora loved. It will be open 24 hours, be located prominently when children arrive, and will have plenty of spaces for children and families to cuddle up and get away from the cacophony of hospital life.

The VMC Foundation described the project this way:

“The library will be a fulcrum for a remodeled lobby and hallway, outdoor patio and a small, multi-purpose room that will preview a grander transformation of the entire 5th floor and building. The family and patient experience will be permanently altered, all for the better.”

The fund for Nora has hit $27,000 toward its goal of $50,000 to cover the cost of the library. Nora’s parents plan to continue fundraising to keep the memorial fund at SVCF at a steady $50,000, however, so they can contribute to new projects and make grants to maintain and refresh the library with  new books.  

In addition to pursuing this work, the couple have become active advocates for patients and families dealing with pediatric pulmonary hypertension, sponsoring a kids room at a recent Pulmonary Hypertension Association conference, and spending hours on a webinar that informs parents about the lessons they learned from Nora’s treatment problems. They also have shared Nora’s story with the Patient Safety movement, which is dedicated to reaching zero preventable patient deaths by 2020.

Claire McCormack and Thomas Boström haven’t decided on a name for the library yet. Maybe Nora’s Library, or Nora’s House. Whatever the name, her family -- which now includes brothers Magnus, 3, and Henrik, 1 -- will be happy that their irrepressible little girl is bringing joy and respite to countless chronically ill kids.

Bostrom Family
A recent family photo with sons Magnus and Henrik. A library to honor Nora is underway at VMC Medical Center.