The Twedt Family »
Hannah Twedt recently celebrated her 15th birthday with her family at Disneyworld.
It was a happy trip and a long way from her hometown of Grand Forks, ND and the Ronald McDonald Family Room in St. Paul, where her parents found a home-away-from-home while she spent many nights as a patient at Gillette Children’s Specialty Healthcare.
Today, the family is filled with hope – a much different scenario than when Hannah was being treated at Gillette for prolonged inner cranial pressure due to multiple craniosynostosis as a result of Saethre-Chotzens syndrome.
Hannah’s condition was rare and had gone misdiagnosed for many years, leading her to a critical point. Without surgery to reconstruct her skull, she would have died. Because Hannah was 14 at the time of her surgery (the condition is typically diagnosed before the age of one), she required a specialty team to reconstruct with artificial bone material, while trying to prevent further brain damage and to have a good cosmetic outcome. Only months after her surgery, Bob and Sue took Hannah to Hawaii to go surfing and to swim with the dolphins, which was a dream of hers.
Hannah still has a long road ahead of her. Her syndrome is progressive, but for now, she is doing well. Though she still returns to Gillette for follow-up care and treatments, she is back to school full time at Red River High School, where she is a straight-A student. Hannah is doing well.
“We had been told many times that Hannah wouldn’t be able to be walk, go to regular school or do normal things that a teenager would do,” says Sue. “But she continues to amaze us with everything she has been able to do.”
The Ronald McDonald Family Room provides a welcome respite for families, where they can relax, unwind, grab a bite to eat or cup of coffee, all while being just a few steps from their child. Four overnight rooms are also available, assigned on a nightly basis to families who need them most.