Robbing Children of their Memories

Good Morning America (ABC News Story) about Addi & Cassi Hempel identical twins afflicted with Niemann Pick Type-C.

Category:

Nonprofits & Activism

Tags:

• Good Morning America
• Addi
• Cassi
• Hempel
• identical
• twins
• Niemann Pick Type-C
• Alzheimers
• childhood
• FDA
• cyclodextrin

[fairygodmotherKr15]

I feel like DOING something; but what? I'll ...start w/ prayer & go up from there! I wonder if this is linked 2 a mutated form of Adrenal leukodystrophy ALD (forgive spelling) See: "Lorenzo's Oil". MY PRAYER: Father God, show me how 2 help. Teach me 2 understand children & adults w/ these many problems so unknown 2 us. Regardless, may God bless them all & teach us how 2 help! So many others w/ other unknown problems, 2.  We'll always be surprised @ how little we know! Let me make a difference!

[GoddessOfYou27]

God bless those little girls...I wonder how they are doing right now...I pray maybe that possible treatment/cure their parents found might have helped...oh Lord please help these little ones as well as millions and millions of other children with fatal diseases such as this... </3

[alaitain]

my daughter had rett syndrome very very bad mental and phycial disorder . most people dont know what rett syndrome is. so i ask them "do you kow what alzheimers is" they say yes. and i then say, there you go. retts usually have a life span of up to 25ys. but she died at 241/2ys. its a terrible thing to see your child to go thru. but she now has no more pain and free of all living society. i speciallize in disabilities. i kow how you all feel.

[DeusUniversa10]

No cure for Alzheimer's disease... Just to clear that up. Don't give false hope, just give support for their 2 big losses.

[JonahTorn]

@Kalevala87 From an American point of view I think it would also be good to work on getting insurance for treatments if and when treatments or a treatment is available. For the rest of the regions of the world I would still push for treatment to be affordable and available. Affordable aid in care giving to help patients and primary guardians/ caregivers would also help.

[Kalevala87]

@fairygodmotherKr15 No, adrenoleukodystrophy and Niemann-Pick are caused by different mutations, although they display certain commonalities. If you feel like doing something, then help fund research and spread awareness.

[RemedyMD]

Thank you for this video. Congratulations on not giving up. We too are trying to help researchers find cures for these rare diseases. For rare disease day and In conjunction with the Children's Rare Disease Network RemedyMD is giving away a rare disease research registry worth $50,000 to the winner of a video submission contest and the organization of their choice. Visit RemedyMD's website and click on the "About" section to read about this partnership and for more details.

[AWDESIGNS8]

if its already found in foods they why not try it on the girls as i hope they are doing to all who have this god is with you. love paril

[CandianSuplex]

So sad :((

[11848158]

u are a prick