Mother Talkers

Every Parent's Nightmare

by Elisa

Wed May 07, 2008 at 08:46:27 AM PDT

An acquaintance at Ari's school actually knows these precious girls and sent around a link to their personal website. The girls, four-year-old twins Addison and Cassidy Hempel, suffer from a rare pediatric case of Alzheimer's disease known as Niemann-Pick Disease Type C. The vast majority of children with the disease die before the age of 20, according to a recent story by ABC News:

"You can't tell your kids they're dying," said a sobbing Chris Hempel, Addison's and Cassidy's mother. "They'll never know."

The Symptoms and Signs

The Hempel family didn't always carry this burden. When the girls were born, they were healthy and hitting all the major milestones.

By their first birthday, they knew how to walk, but soon the girls' parents knew something was wrong.

When Addison and Cassidy were two years old, they caught a viral infection they couldn't shake. Scans showed each girl had an enlarged spleen, but doctors couldn't determine the cause. Then, things began to get worse.

"I started seeing increasing symptoms with balance and coordination -- bumping into walls and falling down," Hempel said. "And when they were around other kids, I noticed they weren't running as quickly or jumping. I started getting really concerned."

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Here are the facts about Niemann-Pick Disease, according to ABC News:

The disease stems from a genetic mutation that causes cholesterol to build up in the body, according to the National Niemann-Pick Disease Foundation.

NPC patients are unable to metabolize the cholesterol properly within their cells so the excessive amounts accumulate within the liver, spleen and brain.

The illness is so rare that only about 500 cases have been diagnosed worldwide, according to the foundation.

Besides savoring even the difficult moments with their daughters, the Hempels continue to seek a cure. Addison and Cassidy have undergone experimental treatments, hopefully bringing them -- and all Alzheimer's patients -- closer to a cure.

Tags: ABC News, Addison Hempel, Cassidy Hempel, pediatric Alzheimer's disease, Niemann-Pick Disease Type C (all tags)

Permalink | 13 comments

  • How horrible (0 / 0)

    I've never heard of that.  What a heartbreak for that family.

    by Erin on Wed May 07, 2008 at 08:48:50 AM PDT

  • religion can be consoling, yet hurtful (0 / 0)

    NPC has no relationship whatsoever to alzheimers, it is an inborn error of metabolism that allows accumulation of lipids to levels that are eventually toxic to the cells.  Each of these diseases individually is rare, but there are more than 40 lysosomal storage disorders.  All are genetic, none has a cure.  A few, including my son's condition, have treatments that may or may not improve the prognosis.

    Knowing what they face, I clicked over to their website.  I felt the blood drain from my face with one phrase - I was so upset I had to walk away to catch my breath:

    At first, we did not understand why God chose for us to be born with NPC

    I would never deny anyone their personal religious consolation.  But they are not the only ones suffering from this, and they should not publicly slap the rest of us in the face with their justification for my child's suffering, not if they want to reach out to the rest of the community.

    by lyn on Wed May 07, 2008 at 10:14:11 AM PDT

  • Show some COMPASSION (0 / 0)

    From what I understand, there are potential correlations between Alzheimer’s and Niemann Pick Type C – like dementia, neurofibrillary tangles, glucose problems in the brain, neuroinflammation, etc. While the underlying biology may not be the same (or maybe it could be since they don’t know what causes Alzheimer’s), the result is the same with many of the symptoms.  People lose their mind and their skills and they die. These girls are being treated with a compound that was developed by UCLA for people who suffer from Alzheimer’s.  

    I know the Hempel family personally and these are GOOD people that are trying to save their daughters and other NPC children. I can't believe that someone on this message board would criticize a family who is losing two children (their only children)to this horrible disease. Come on...show some compassion. How could you understand something like this happening to you?  Some people believe in a higher power and that things happen for a reason, some people don’t. It's hard to wrap your head around. Our community has pulled together and connected with this family.  The Gala event this Saturday is sold out with over 850 people attending.  Plus, there are wonderful people from all around the Country knitting CureCaps, holding events etc. I'm truly very sorry about your son's situation and I wish you both well.

    by reagansmum on Thu May 08, 2008 at 12:56:30 PM PDT

    • I'm glad the Hempel family (0 / 0)

      has such wonderful support.  I don't begrudge them whatever belief system it is that helps them make sense out of this tragedy.  However, I think we can afford to  have compassion for all who are dealing with life altering/life threatening diseases within their families.  We all have our own unique responses and ways of coping.  People are allowed to have different perspectives.  Please understand that many times, when going through a difficult health crisis, many can feel as if those saying "its God's will" or something similar can feel as if this is awfully close to having judgment passed.  If the Hempels can deal with this tragedy by understanding it that way, that's fine.  However, others do have the right to find this unacceptable.

      by tjb22 on Thu May 08, 2008 at 01:33:19 PM PDT

      [ Parent ]

    • I think (0 / 0)

      lyn was just saying how it felt to read that when she's in a similar situation.  

      by Erin on Thu May 08, 2008 at 05:35:53 PM PDT

      [ Parent ]

    • I have every sympathy (0 / 0)

      for the Hempel Family. But just as the Hempels are entitled to express their feelings, Lyn is just as entitled to express hers. I don't think it makes Lyn any less compassionate towards your friends to say what she did. I imagine you must be heartsore for your friends and their children and feeling very lioness in wanting to protect them, but I am sure Lyn did not have a mean intention in writing what she did.

      by Rachel on Thu May 08, 2008 at 08:25:12 PM PDT

      [ Parent ]

  • I would ask that (0 / 0)

    you show some compassion... For another mother, in a similar situation, grieving for her own child.  

    I can't believe that someone on this message board would criticize a family who is losing two children (their only children)to this horrible disease. Come on...show some compassion. How could you understand something like this happening to you?  

    I'm sorry, but I can't believe someone who has never before participated in this community would come here and criticize a woman who is in great fear of losing her own child to a similar disorder.  You ask how she could understand something like this happening to her??? Because it is.

    Lyn, your family continues to be in my thoughts...

    by TeachPeace on Thu May 08, 2008 at 07:01:04 PM PDT

Permalink | 13 comments