www.GabrielleLaVerde.com See Gabrielle on Fox 35 www.myfoxorlando.com What do we know about Niemann-Pick Disease (NPD) and Types A, B, and C. There is even a Type D which is closely related to Type C. The Name Niemann-Pick derives from two German Pediatricians. Albert Niemann, the first doctor to identify Type A in 1914, and Ludwick Pick, who first identified Type B in 1927. Niemann-Pick Disease (NPD) is closely related to Alzheimer’s Disease. and is often called The Childhood Alzheimer’s. Patients with NPD Type C are not able to metabolize cholesterol properly in lysosomes. Consequently, excessive amounts of cholesterol accumulate within the liver, spleen, and brain. Signs and Symptoms of Type A may include: feeding difficulties, large abdomen within 3-6 months, a loss of early motor skills, and a rapid decline in the child after 6 months, leading to death by 2 to 3 years of age. In Contrast, the severity and onset of Type B is very variable. Some patients with Type B develop repeated respiratory infections & breathing problems. Life Expectancy of Type B is highly variable, depending on the severity of the symptoms. Type C NPD usually affects children of school age but the disease can strike at any time from early infancy to adulthood. Symptoms of NPD Type C may include jaundice, a large spleen and/or liver, difficulty with upward and downward eye movement. Other symptoms include: clumsiness, and problems in walking, controlling limb movement, slurred or irregular speech …
Video Rating: 5 / 5
My eyes are filled with tears as I heard this. I am truly sorry for Loss of children
I wont to prayers &douaa to Allah for all children
@clo101976 I’m so sorry to hear about your son. I understand what you are going through. Gabrielle was relatively “normal” at first & we were told she just had some developmental delays & would require therapy to “catch up”. As the condition progressed, it became clear that it was degenerative. I know your heartache. I hope you’re doctors are able to obtain a diagnosis. At least then you know what you’re facing. Thank you for watching. I will be praying that you get your answer soon.
My son is now 7. He has muscle deterioration but the doctors dont know why. We were told eventually he will be in a wheelchair. He shakes off and on for “no reason”.We have struggled for years to try and find out whats wrong and get no where. This vid is so touching. Nieman Pick was just recently brought to my attention adn not by a doctor but by a school employee. Whether this is what my son has or not I will be spreading the news.
I am researching this disease in my biology class. I didn’t understand it til now. I will explain this how you did to show the rest of the class how sad this is. I pray that a miricle occurs and a cure is found or atleast a treatment to lessen the pain on these poor childrens lives.
My friend has NPDC, and he turned 15 two months ago. He has spent the 3 past weeks in the hospital. i went to go visit him the other day. His MRI scan said his brain was like a 70 year old mans. He has been seizing 12-15 times a day. Luckily i didnt see one. He is such a funny kid and is always in high spirits, always talking about his “babes.” But the other day when i visited him he was shaking from this experimental medication hes on. It is sad because he is slipping further away each day
I will keep you and your daughter in my prayers. No one should have to suffer this kind of pain, regardless of what the name of the disease is. Be strong and cherish each and every day with your daughter. Feel free to write me any time.
i spent a few years not knowing what is wrong with my daughter finally we have the diagnoze its just to difucult that we cant help her to get better its horable ill pray for my child and for all child in this worldwith similar disease god help us
one of my dearest friends, lost her daughter many, many years ago, and today, because of my videos, she wonders if her daughter, Rhonda died for NPC. I’m sorry for your friend, but this continues… too many parents don’t know where to turn, and how to find a diagnosis. The beauty of GabrilleLaverde(dot)com is that awareness is paramount. Everything we do is based on increasing awareness. Thanks for your comment.
Exactly! One of our goals is to bring this disease out of the darkness! Doctors must become aware of it so another family does lose years trying to figure out what they’re fighting! Thank you for taking the time to post. All our best to you and your daughter!
Thank you. You have helped us fight just by taking the time to become aware of this condition. I hope no one you know will ever have to face this, but if they do, you will be able to help them get their diagnosis much faster. Thank you for caring.
I was doing research on my daughters autism when I found this video. Thank you so much for informing me of this. I think a friend of mines little son may have died of this. The doctors couldn’t find out what was wrong with him. He showed all the symptoms that you gave in this video. I hope that more people especially doctors become informed of this so parent don’t have to go through the not knowing stage. If you know what something is I believe that that you can at least try to fight it.
I will assist in fighting this disorder. Because I hate to see children die. God Bless u all.
Adi and Cassi, yes, we watched it the morning it aired. Their parents are working very hard, and they are wonderful wonderful people. Thanks for your comment!
Thank you for watching. It’s true – - watching your child suffer is horrific. We know the Hempels and have been in close contact with them over the past several months. Thank you for becoming aware of this condition.
That’s really heartbreaking, it’s very difficult to fight back the tears watching this. It’s bad enough having your parents suffering from alzheimers but to see your children suffering from a similar condition is just terrible, my thoughts are with you. I just watched a related video on Yahoo/ABC News about two twins diagnosed with it. You should check it out.
Thank you for your prayers. We need them desperately.
Your daughter is beautiful and I will pray that a cure will be found for her and all these other precious children. God Bless.
Thank you for watching. We want other people to know about this disease – - no one should have to go through 4 years of testing just to obtain a diagnosis! Thank you for becoming aware of this disease. Your knowledge about NPC may be able to help someone in the future!