Giving Back When the Journey Is Not Over: Hope’s Story

Morning rain clouds in Wisconsin could defeat a golf tournament, but Nyra and Kyle kept the day-long event they planned in July 2023 running on the same fuel that their youngest daughter is named after: Hope. Within a few hours the rain cleared, and the golfers were on their carts across the course.

After being among the first patients at The Chicago Institute for Fetal Health (CIFH) at Lurie Children’s to undergo a fetoscopic repair for myelomeningocele, a severe type of spina bifida, Nyra was inspired to do something to give back to the hospital. Since then, The CIFH has performed more than three dozen fetoscopic repairs for open spina bifida. With her background in networking events at a golf course, she decided to host a golf tournament to raise funds. 

The event was a remarkable success. The first year’s attendance – in 2022 – filled two nines, the first and second set of nine holes on the golf course. Nyra said she believes it was their Wisconsin community’s personal connection to their resilient girl that has helped drive support. The community followed Hope’s journey from her fetal diagnosis, fetal surgery, birth story and milestones. 

The support continues to grow. For the second annual tournament, registration for two nine-hole courses filled in just three days. The golf course manager suggested they open registration for the third set of nine. Nyra was not expecting to plan an event with a 40% increase in attendance, but she took the leap. To her amazement, within a month the registration grew from 156 to 216 golfers. 

The tournament has become an annual success, raising $55,550 in donations for the hospital and The CIFH. This year, some of The CIFH team members who cared for Nyra and Hope made up a team competing in the tournament. Medical Director and fetal surgeon Dr. Aimen Shaaban, nurse coordinator Tricia Beelman and maternal-fetal medicine specialist Dr. Xavier Pombar sported lavender polos on the course, happily representing The Chicago Institute.

 “The rain cleared, and it was just beautiful. Everything about it was beautiful,” Dr. Shaaban said of the event.

As Hope continues her treatment for spina bifida, her prognosis for walking remains positive. Despite her current challenges, providers feel she is going to be able to walk. The journey is not over, but amid treatments and procedures, Nyra and Kyle continue to share their experience and successfully raised funds for Lurie Children’s and The Chicago Institute for Fetal Health. It is the embodiment of Hope that inspires everything they do.

“Life is kind of eventful, but we wouldn’t have it any other way,” Nyra said. 

Read more about Hope’s story here.

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