NF Smarty Pants

Archive for the ‘Personal Stories’ Category

Tonderai Mandigumura traveled from Zimbabwe to Minnesota to receive surgeries that he couldn’t have in his home country. St. Joseph’s Hospital donated services made everything possible. Now, he’s ready to head home.

Previous posts:

• MN Hospital Donates Services to Zimbabwe Man
• Tonderai Mandigumura in Minnesota

Nikirah Goodard passed away in 2008, but the retroactive benefits approved to go to her mother will help other children with NF. One of the ways Ms. Goodard intends to pass along the money is by sponsoring a new camper for Camp New Friends each year.

Lisa Nancarrow has a painful and deadly tumor in her abdomen. Her Ontario doctors are out of options. Lisa struggles against her country’s health care system to receive care at the Mayo Clinic in Minnesota.

A dark and horrible story coming out of Washington. Casey Sternitzky was waiting on the bus that takes him to school when two high school boys stepped on and physically assaulted him. Casey suspects that the difficulties resulting from his neurofibromatosis influenced the beating.

The Shawnee Dispatch has a long article about the Rentschler family and their efforts at increasing NF awareness.

Read about Edith Garrett’s experience with bevacizumab and how the drug helped her get her hearing back.

The Summers-Mannion family of Teesside, England credits Zoe’s Place, a baby hospice facility, with helping them through the difficulties of caring for a son with NF. The Gazette has their story.

The doctors haven’t given Jonathan Geurkink many days left. The Mille Lacs County Times has an article describing how dog therapy is enrinching his hospice care.

We first heard about Tonderai Mandigumura in March when St. Joseph’s Hospital in Minnesota offered to removed the large facial tumor on the Zimbabwe man. Now, the main operations have been completed. Over the next few months, he will undergo additional procedures and medical care with the eventual goal of returning home to a more fulfilling life.

Kenya’s Daily Nation is reporting on the case of Stanley Badia. From the newspaper accounts, no one can be sure the eight year old has neurofibromatosis, but the confusion and frustrations felt by the family must be familiar to many NF families around the world.

Today, there are two follow-up stories.

• consulting a plastic surgeon
• pledges of support