NF Smarty Pants

Archive for the ‘Personal Stories’ Category

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

The following links will lead you to the various sections. There are even more break out features, but those should be easily accessible from The LA Times website.

• About the Series
• Part One
• Part Two
• The doctors respond to readers’ questions.

Doctors at St. Joseph’s Hospital in St. Paul, Minnesota, have offered to help Tanderai Mandigumura, a 22-year-old Zimbabwe man with a disfiguring facial tumor. From the preliminary information, Mandigumura may have neurofibromatosis.

As the Irish government cuts programs and school support, children with special needs are feeling the effects of decreased services.

The Limerick Post reports on the struggle of a family with two daughters who have special needs. One is diagnosed with NF.

Read a quick and well-written column to which every parent can relate.

The Kansas newspaper The Morning Sun has a story about Cheyenne Batchelder. This six year old had extremely thin bones in her right leg as a result of NF. Eventually, the leg had to be amputated.

She now is in the process of learning to master her new prosthesis.

Alexis “Ali” Didier from Bolingbrook, IL, is going to Disney World thanks to the Make-A-Wish Foundation. Recently diagnosed in 2007, Alexis has jumped into the campaign to fight NF. She and her family will participate in an upcoming NIH study.

They will also walk in NF, Inc. Midwest’s Great Steps fundraising walk this year.

Alexis’s Girl Scout troop joins the effort by selling wristbands and lip balm.