One Child's Story through Niemann-Pick Disease

One Child’s Story Through Niemann-Pick Disease Type C
Stacey Lynne Vorpahl (NPC)

January 3, 1985 – October 9, 2004

10 – 10 – 10 Challenge

Please Help Raise Awareness for Niemann-Pick Disease

 In loving memory of Stacey and all the other precious children lost to NPD, and in honor of those still struggling, please join with us in our Quest for a Cure.  Meet the 10-10-10 Challenge and take at least one simple action on October 10, 2010, to spread the word about this devastating disease. 

Below are photos depicting the journey through Niemann-Pick Disease Type C for one child, Stacey Lynne Vorpahl, the daughter of NNPDF Board Vice Chair Barb Vorpahl and her husband, Gary.  The sixth anniversary of Stacey’s death is October 9, 2010, during National Niemann-Pick Disease Awareness Month. 

Awareness drives funding, funding drives research, and research will find the treatments and cure for Niemann-Pick Disease.  Please take a few moments to read Stacey’s story and check out the easy ways to become involved below.

Here is Stacey’s story, told by her parents:

Our daughter, Stacey Lynne Vorpahl, was born January 3rd, 1985.  She was jaundiced at birth but otherwise seemed happy and healthy.

Stacey was only 18 months old when she was diagnosed with NPD due to an enlarged liver and spleen.  She exhibited no other symptoms except slight balance problems.

By about age five, Stacey was exhibiting vertical gaze palsy, slurred and repetitive speech, learning problems, and cataplexy (sudden loss of muscle tone).

When Stacey was seven, seizures began, and her falls increased in frequency and severity.  She was no longer able to speak, had difficulty swallowing, and walked only with assistance.

By age nine, Stacey was confined to a wheelchair and was completely incontinent.  Her arm strength and control was diminished, and the seizures increased in frequency.  Stacey was now unable to swallow, and so was fed solely through a stomach tube.

Chronic respiratory problems had set in by the time Stacey was thirteen.  She had lost all motor control and the frequency of seizures had increased to 15-20 per day.

By 18 years of age, Stacey had lost her sight, a tracheotomy was needed and 24-hour skilled nursing care was necessary to keep her airway clear.

Stacey died on October 9, 2004, at the
age of 19 years.

Our 10-10-10 Challenge is to get 300 people to share information about Niemann-Pick Disease with 10 other people, via email, Facebook, Twitter, or other means (even the old-fashioned way, face-to-face!). 

Here are some simple ways you can help families affected by Niemann-Pick Disease on 10-10-10:

• Create awareness of NPD by forwarding this message to 10 (or more) people in your email address book.
• Post this message to your Facebook page or blog.  Post a link to the NPD Awareness Facebook page (click the Facebook icon on the NNPDF Home page at www.nnpdf.org).
• “Tweet” about NPD and share the NNPDF Web site address:  www.nnpdf.org
• Take a group of friends out for coffee or dessert.  Tell them about NPD and the devastating effect it has on families.  (We will be happy to supply newly-updated brochures for your use, just contact us.)
• Donate $10 for NPD on 10-10-10 and encourage your friends and family to do the same.  Most of us spend at least $10 a week on discretionary items (snacks, soda, a movie, fast food).  Ten dollars doesn’t seem like a whole lot of money, but when many people each give ten bucks, it adds up!  Donations may be mailed to:  NNPDF; P.O. Box 310; Fort Atkinson, WI; 53538, or made online via our Web site:  Donate Now
• Encourage 10 contacts to check out our NNPDF October Awareness Online Auction!  Bid high, bid often!  http://www.biddingforgood.com/nnpdf/2010
• Get a headstart on your holiday shopping by purchasing ten of the darling new 2011 Puppies Calendars, "Treasuring Each Day."  These calendars raise funds for the NNPDF's essential research program and important Family Support Services.  For more details and to order, click here.
• Issue a press release to raise awareness in your community about NPD.  Contact us for help!

Thank you very much for your help and continued generosity, on 10-10-10 and always! 
Those who live with the challenges of Niemann-Pick Disease need and truly appreciate your kindness and support, today and until the cure is found. 

Together, we will Persevere in Our Quest for a Cure!

Together, we can make a difference!

  October is National Niemann-Pick Disease Awareness Month

Please help us maximize this opportunity to raise awareness and funds for vital research!

Shop the NNPDF Online Auction!