A Mother's Diary - Is This Autism? What is Niemann-Pick?

[JessWuvs2laf]

@gabrielle824

AZproductions told me they didn't write that negative comment, this person was hacked and someone else wrote that comment. I'm sorry for this and they wanted me to ask if you could unblock them

Thank you

[JessWuvs2laf]

@gabrielle824 I really hope she gets better. My mom told me about the fundraiser, and when I read about Gabrielle, I just wanted to tell my friends so they could help. I hope she gets better and it kills me inside to know what happened. :C

[JessWuvs2laf]

I'm so sorry this happened. My mom told me about her and the fundraiser, I would be so happy to help by going to the fundraiser. I'm almost crying right now, typing this. It just hits me over and over & it hurts to think about what she's missing. I really hope from the bottom of my heart that she gets better, and I want to try and make a difference for her. I want you all to be able to see her walk again, to her wedding day and on.

Shedding tears, Jesse (Jesswuvs2laf)

[gabrielle824]

Kalevala87 I do agree, though, that most of the time doctors should be more aggressive when a parent is telling them that something is wrong with their child. The pediatrician we switched to when she was 4 did it instantly. We love her. I guess one of the lessons learned is to keep looking for an answer when you know something is wrong. We were fortunate to have so many doctors working so hard on her behalf & who didn't give up on helping us.

[Kalevala87]

It is truly appalling that in 2011 it should take so long to get a diagnosis of a relatively known condition. Paediatricians should ALWAYS refer parents to a neurologist first thing whenever developmental delay or regression is suspected. It should become routine.

[gabrielle824]

@Kalevala87 Trouble is, her condition is not well known, and is classified by the CDC as "ultra-rare". To futher complicate her diagnosis, Gabrielle didn't have either of the two signs typically associated with NPC - an enlarged liver &/or an enlarged spleen. For her, all of her symptoms have been neurological, which does make it more difficult. And usually, when you hear hoof prints, it's a horse. Every once in a blue moon, it's a zebra. Gabrielle is a unicorn.

[andymission]

Mother Creator

~~ Loves You ~~

[LeslieDMartin]

*Big Hugs* to you and your family from ours <3

Thank you for sharing your story. You all are in my thoughts and prayers

[GelandnaleG]

7:10pm Tuesday (CST) - Time in M

[karmawheels]

So Sorry that you had to spend so long fighting for a correct diagnosis. Its this loss of time that can be as frustration as other parts of such awful illnessess. I wsh your family peace and hope for now and the future and hope that your continuing fight helps find a cure for this condition. cx

[gerlotion]

sad

[AZproductions117]

Imma post the first negative comment: THIS MUSIC IS FAKE AND GAY

[goofygal19]

She is so beautiful. What a sweetheart.

[ZoeyK86]

This sounds like Rett Syndrome.

[gabrielle824]

@ZoeyK86 Gabrielle was tested for Rett's, but the test came back negative. She was thereafter positively diagnosed with Niemann-Pick Type C. I'm not sure if Rett's is progressive, like Niemann-Pick, but the symptoms are very similar. Thank you for watching.

[ZoeyK86]

@gabrielle824 Yes, Retts is progressive but its not fatal (well it is in boys most of the time) . I'm so sorry for your daughter.

I looked up Niemann-Pick. This is really sad....

[macguyvergirl]

What a beautiful video. Thank you for sharing your story. I'll do what I can to post it on other sites to help raise awareness.

If you would like to see my little guy, who has yet to receive a diagnosis other than "Developmental Delay", watch "Tristan In NM Rain" on my channel.

They said he has hyperflexibility in every joint, low muscle tone, and "Functional flatfoot". Your video reminded me of that trip to the neurologist. I wish you only the best :)

Aryca ("macguyvergirl")

[gabrielle824]

@macguyvergirl Thank you. I will definitely check out your son's viedo. I'm so sorry to hear of his difficulties. I know all too well how exhausting and frustrating it is to search and search and not find any answers, but don't give up. Do everything you have the opportunity to do for him. Go to bed each night knowing you did all you could for him that day. It's the only way I can sleep at night. I pray you will find the answer soon, and that he will be okay. Thanks for watching.

[ajaisevinah]

Wish you all the best of luck! God bless your daughter:) It's great to see you not giving up. Miracles may happen, you know.

[candizsweet1]

Your Daughter and your family are in my prayer...

[brendeska]

God send angels only to special people. It takes special skills, special love, to be the mom of an angel like her. Just like the angel Gabriel brough good news to Mary, your littler Gabrielle will keep bringing blessing to you... God bless you, your daughter and your family. I will keep both of you in my prayers.

[BamBabyBrenda]

Wow!

What about now? can she do stuff now like point or umm? you know a way of communication?

[gabrielle824]

@BamBabyBrenda No, she has no motor control. She can roll around, moan and cry. She can't sit up anymore, or hold a spoon ... she's like an infant. It's very hard to watch. But she's got the sweetest heart & we adore her. We're grateful for every day.

[lisalisious15]

i'm soo sorry this is heart breaking... she's in my prayers...

[gabrielle824]

@lisalisious15 Thank you for taking the time to watch. She is so precious. I don't know if you believe in angels, but I believe she is one and I am honored to be her mom.

[emmie160745]

NP - C is a horrible thing. You are blessed to have Gabrielle, and I pray for her every night, as I do for all the families affected by Niemann - Pick. I lost a good friend to NP-C. I extend my greatest sympathies to you.

[gabrielle824]

@emmie160745

I'm so sorry to hear that you've been touched by this disease. Thank you for your prayers.

[xxbellbabyxx]

I will never forget you or this video. I live in Lakeland and I am the mommy to my own Gabrielle. She loves to look at youtube. I am going to show her your video and ask her to pray for the other Gabrielle. Bless you <3

[indigopurplecat]

Have you ever thought of taking her to a homeopath? They saved my life and Helped my granddaughter tremendously who has autism.

[expluensa]

This video touch me so much..God Bless this little Girl.....

[cjvchile23]

May God bless this little girl and her lovely parents.

[carinamena]

Gabi is beautiful in every way but what most attracts me is his eyes the look of a fighter!

I know that this disease is difficult to accept but its history has given me a life lesson!

Take care of your angel that God gave you that you knew she would fight to the end.

Best wishes until then!

[gabrielle824]

Thank you. And yes, she is a fighter. She has been through so much and is such a tough cookie. I do cherish each and every moment I get to spend with her, and I am honored to be her mother. It breaks my heart to watch her fall apart, but I adore her sweet spirit. She has taught me so much. Thank you for your kind comments.

[RemaFahed]

Sweet girl God bless her and cure her and the other children. My friend in Lebanon lost her daughter 4-years old and yesterday her son 1-year old was diagnosed that he has Niemann Pick. I wish I can do something but unfortunately cannot but to pray for them and pray that doctors will be able to find a cure for this disease asap.

[luchygarcia1]

This video touch me very much because i have a little daughter with the same name I will pray for your beautiful daughter and god bless her, you and your family.

[gabrielle824]

I'm sure she's beautiful. I'm sure you already know this, but cherish her everyday. Thank you so much for watching and keeping my Gabrielle in your prayers.

[paolotagliacozzo]

Hi, i'm italian father,first sorry for my school english,i had a beautiful girl with niemann pick type A and she died in august 2007.i want say to you, strong mother ,that we must figth every day for us and for the other children that are fightyng day to day with this patologies.a kiss by my family and to little Gabrielle.fortunatly in Italy we have an association of niemann pick with a lot of family that have this problem

[gabrielle824]

I'm so sorry to hear of the loss of your daughter. Niemann-Pick is such a horrible disease ... it's great that you have the advantage of that kind of support. Thank you for being strong enough to continue to care about those who fight NP. It is clear how much you love your little girl knew ... and I'm sure she knew that. We will continue to fight for Gabrielle ... and for the other children who need a cure.

[angelena1979]

looks like retts syndrome.. but im no doctor.. just do alot of reading

[gabrielle824]

Retts is one of the conditions she was tested for, but it came back negative.

[glucas75]

Every single one of our kids came to this world to offer some wonderful contribution. All of us parents of kids with disabilities experience so much more joy at one smile, one step, one reach...Your beautiful Gabrielle came to this world to teach us something wonderful about human kindness...she, just by being herself is a walking miracle! God bless. Think of how many lives she has already touched. I know that just by watching this video she has made my life more meaningful.

Thank you,

Gaby.

[gabrielle824]

I couldn't agree with you more.  She is truly an angel and I am honored to be her mother.

[JLKnChrist]

I will pray for sweet daughter and your family. God Bless.

[Stolenmyheart28]

The things that you write about at 5:58 will not matter. She will teach you more about love, patience and kindness than you ever knew. You will love her more than you ever could love a child. My niece has Rett Syndrome and she cannot walk or talk, but she brings so much beauty to this world. Good Luck and God bless!

[mommapalmerof4]

Your daughter is so beautiful and i will pray for her everyday. You are such strong parents and that is why God chose to give you such a precious angel.

[RockstarMandy14]

you should put this on Mystery Diagnosis (:

[gabrielle824]

Yeah, I've thought that too!

[gizington]

Her litle face at 6:03 speaks a 1000 words. She is very sweet. I have a friend whos son has autism. My heart goes out to you and your daughter. xxx

[kaydeejay21]

Hi. How long did it take for you to get the results back for the skin biopsy? And how is your daughter doing?

[gabrielle824]

If I remember correctly, the results from the skin biopsy took 6 weeks. She is not doing so great. We had to take her off the medication because it was making her so sick - - she literally couldn't keep it down. Since then, she has declined. She now needs a wheelchair, has started to have seizures, and is beginning to have difficulty swallowing. We are devastated, but trying desperately to keep her as happy as possible.

[kaydeejay21]

We're currently waiting on our son Gavin's skin biopsy to come back. It's only been a week but we are very anxious. He is having difficulty walking and hardly talks now. He has to use a wheelchair to get on and off the bus and for long distances. He can't even hold his fork when feeding himself so we give him finger foods for the most part. What medication was she taking? Was it Zavesca? I heard the side affects were horrible. Do you have any new videos that you'll be posting soon?

[gabrielle824]

It was Zavesca that was making her so sick. She vomitted and had diarrhea constantly. At 7 she weighed only 42 lbs. Not all kids don't have the type reaction she did, though. It apparently did help keep her symptoms at bay, but it became a quality of life issue for her. She did gain 4 lbs immediately after stopping the Zavesca, and has since gained another 2. I will be praying you get results quickly. How old is Gavin?

[gabrielle824]

She did. Why do you ask?

[birthingbabe]

Did your daughter get an immunization injection at 18 months?

[gabrielle824]

Thank you for the encouragement. We are always on the lookout for new treatment options, and we are watching other NPC kids who are receiving experimental treatments.

[kaydeejay21]

This is so sad to see. My husband and I have research this horrible disease and our convinced our 5 year old son has it. He can hardly walk anymore and is no longer potty trained. He doesn't speak much anymore and it's just hurtful that we may lose him and will never be able to have more children. Thanks for the video!

[gabrielle824]

I am so sorry that you think your son may have this disease. It makes me sick to think of another child that may have this. The only test that can confirm it is a skin biopsy. Have a geneticist run the test for you. Living with the unknown is horrible. I know what it is like. You have the right to know what you are fighting. Please let me know how he is doing.

[gabrielle824]

Thank you. We believe she is an angel and we feel very blessed that she is ours.

[bearychocolate]

You have a beautiful daughter. God bless.

[FishelKANI]

You could adopt one of the millions of frustrated, homeless and dispaired children in the world.

[gabrielle824]

I hear you, however, given Gabrielle's current medical problems, it would be impossible for us to devote the necessary time and energy to another child right now. She is medically fragile and continues to slowly decline. She needs everything we can give her. To bring another child into our home would be unfair to both Gabrielle and that other child. Have you ever adopted?

[krazyrita85]

I am so so sorry...what a beautiful little girl. God Bless.

[gabrielle824]

Thank you.  We think she is beautiful, too.

[xthecookiex]

wish your little angel all the best!! shes beautiful

[Kairi9720]

im sorry to hear about your daughter. i deeply hope she recovers. i hope this is cured and no one will deal with the pain you are suffering this very moment.

[gabrielle824]

Thank you for taking the time to comment. I am honored that she has touched so many with her sweet, gentle spirit. Gisle has done an amazing job at allowing her to shines through in these videos. Thank you, also for your kindness.

[Kairi9720]

your welcome

[gezsa25]

hi my daughter also had this terrible nieman pick she passed away i hope u find a cure for this hope she gets better

[gabrielle824]

I'm so very sorry to hear about the loss of your daughter. I will be praying that peace fills your heart.

[btheadtrip]

Thank you so much for sharing this story with us all.

I am going to raise awareness of this disease in my circle of friends. All is not is vain, there will be light at the end of the tunnel.

Spreading the word leads to more research and finally a cure. From my family to yours: peace and love

[gabrielle824]

Thank you so much. Creating awareness of this disease is a huge focus for us. Families should not have to endure 4 years of medical hardship to have any condition diagnosed. I hoped that by speaking out and letting our private pain be known, we could spare another famliy some of the heartache of lost time. Your willingness to help us spread the word is an amazing gift to all families fighting this horrible disease. May you be blessed 100 fold for your kindness.

[01stanbk]

how sad, she is such a butiful child. you will be in my prayers.

[lolasalsa13]

all i could say is =[

how sad =[[

she will be in my prayers.

[crapcakes5]

I feel hope for your child from the bottom of my heart. This story utterely depresses me...

[gabrielle824]

Sorry to have depressed you! That wasn't my intention ... just trying to get the word out. It's a scary disease and parent's can't afford to lose time obtaining a diagnosis. I do appreciate you taking the time to watch and comment. I pray you never know someone who has this in their life.

[ladyphat85]

o my god,i kno as a mother dis is painful for u. ive got 2 little girls, a 3year old and a newborn and i know this is just something that no mother would ever think of happening. i keep u and ur family and little girl in prayers. remember doctors cant do the things that God CAN do.

[gabrielle824]

Thank you for your kind words, thoughts, and prayers. I have prayed and begged daily for over 5 years that God would heal her ... He certainly hasn't yet, which breaks my heart.

[mytwinswithautism]

We also did HBOT hyperbaric oxygen treatment. IT WORKED TOO! Mainstream doctors don't always approve, but these were my babies and I needed to help them.

[Minizilla]

Your daughter has the prayers of my family, and my church. May God bless her, and you. Know that you have love coming from Boston.

[gabrielle824]

Thank you so much for the prayers and support. The blessings have already started. Gabrielle is starting to show some small improvements since her experimental treatment.  The next few months will be more telling, however we are very encouraged at the one month mark. She is truly an angel - - we will never give up on her. P.S. I love Boston! I have an aunt in Peabody.

[autimum]

I pray for your sweet Gabrielle. Our school community lost a precious little boy only 6 weeks ago to NPC. I didn't know anything about it until then so well done for raising awareness.I know she will incounter more pain & frustration than she should...But she will also know her parents & family LOVE her. My sons autism causes him great frustration & confusion...but he knows we love him & he's always safe with us & I'm sure Gabrielle knows it too. Gabrielle will always be in my heart.

[gabrielle824]

I'm so sorry to hear about the little boy lost to NPC. I'm sorry, too, to hear about your son's struggle with Autism. It breaks my heart when children suffer. But every time I look at her, I think about how fortunate I am to be her mom. She is an angel on earth, as is your son. I know you are probably right, but I will continue to fight for her life. Thank you for taking the time to watch.

[kovskaja]

Type C is special, everything is possible, althought the severeness depends on the age the symptomps shows first. I was very touched by the video and did a little recherché, found out that they're doing "promising" research with "inhibitors of the glykolipid-synthesis" (hope I translated it correct).

[kovskaja]

(cont.) However, all the best for her - she will not only know frustration, disappointment, grief, pain and despair, you know that. You have each other and you love each other and you know to be thankful for the little time that is given to us to share moments of love.

In the end this is everything that matters, that little moments, and I'm sure you and your husband give her the "full amount" for a lifetime.

[gabrielle824]

Yes, that is true. Since Gabrielle began having trouble by the time she was 2, had already lost her ability to speak by the time she was 4, and is having such difficulty with her balance and coordination, I fear her case is on the severe side. Despite all of this, we continue to have hope for her. We simply are not ready to give in to this disease. We are praying for a miracle.

[Createamiracle]

I thought your Video clip was very touching. You are in pain for your beautiful daughter, but God will look after her. You can do whatever you can on an earthly level, but you must also accept that sometimes Gods plan is greater than ours. What is important is that you love your daughter and make every moment special for her no matter how long she is here. She is now and will always be a special Angel.

[gabrielle824]

You are right. We are in pain over what this disease has taken from our beautiful child. And we will do everything we can for her. I pray our efforts and our love will be enough to save her life. She deserves a chance. You are also right - - she is truly an angel on this earth and we feel incredibly blessed that she is ours.

[Revish2008]

I am shell shock with this video...how could this happen? shez sooo pretty! my tears rolled over..i would pray to JESUS for sure he will not allow are to fade away...shez such a darling, she has all rights to enjoy and be healthy happy....Amen! Gabrielle! we all are here, we will pray for you..you will be fine...love u..

[gabrielle824]

Thank you. And thank you for watching our video. I pray you are right. I pray God will allow her to be the first child with this disease to not only survive, but really be able to live. Thank you for keeping her in your prayers. Please keep the other sweet children with this disease in your heart also. They are all angels.

[shaunagurl89]

0MG!...SHE iZ SUCH A BEAUTiFUL LiTTLE GURL!...i H0PE SHE iZ D0iNG BETTER!...SHE TAKEz W0NDERFUL PiKKTUREz T00!...LUV THEM!

BUT WAT iZ NiEMANN PiCK!?

[patrick95350]

I am a mom of two special needs children (autism). People meet me and act like I am so strong. I can not imagine what you are going through, and I am so very sorry. Your daughter is beautiful and her bright spirit shines through in these photos. I mean this, I will pray, and pray and pray for you. Stay strong, and know in the dark moments that there are so many people out there lending your their strength, even people who have never met you! You and your husband are your daughter's best gifts!!!

[gabrielle824]

I am sorry to hear of your children's autism. It breaks my heart when children suffer in any way. Thank you for watching and becoming aware of NPC. And thank you for your prayers. So often we feel alone in our fight - - it's a great reminder that so many others are holding our sweet Gabrielle in their hearts.

[psychic757]

i am sorry about your baby but i know that god can do anything i will pray for her god bless you i am also having things happen with my son he i 2 and not talking yet but i know that he will soon talk we are going to dr now and hope to know soon whats wrong with him but i know that god will be there and take it from him and i know that can helped you baby dont give up on her she will make it have faith god bless you just keep up the faith and dont listen to man god is evevy thing

[gabrielle824]

I not sure why, but my earlier reply didn't post. I'm pray your son will be fine. Chances are, it's nothing serious. Anyway, I thank you for your encouragement. I appreciate you taking the time to watch our video.

[mursdouatine]

I'm so sorry for your daughter's diagnosis. I had the pleasure of working with a girl who also has NPC by the name of Dana. Her family started the DART Foundation. I know how hard it is to watch someone you love fade away but you must stay positive. The ending of your video seemed painfully pessimistic. You have every right to be sad but please try not to dwell on the sadness. Think about the time you will have with your precious daughter and try to stay strong in the face of this cruel disease.

[gabrielle824]

That wasn't necessarily our intent, however we are trying to be realistic about this disease. We cling to every moment with her, and still pray every day for a miracle. I will check out the DART Foundation.

[blacksheepgirl]

I'm very sorry and I'm going to pray for her. I feel so bad for you and I know God knows what's going on. I pray he sends his healing touch to her so she'll whole. God works in mysterious ways that we don't always understand and again I'm sssooo sorrry.. So sad. I promise I'll pray for her. :)

~BSG

[gabrielle824]

Thank you for your kind words and for your prayers. We do need them. We are still hoping for a miracle.

[disneyloverxo23ox]

your duaghter is beautiful.

i wish you all the best

your story really touched me.

[gabrielle824]

Thank you so much for taking the time to become aware of Niemann Pick.

[GlobalPurchasing]

I never write comments but I think what you are doing is amazing. My heart goes out to you and know that people you don't know and never will meet are thinking about you and you have deelpy touched them.

[gabrielle824]

Thanks for your support. We have been blown away by the all of the encouragement we have received from so many caring people. It is comments like yours that gives us the strength to continue working to find a cure for this disease. Thank you for being so kind.

[siggnolove]

hello, this clip definately touched me in a huge way because my little niece has been diagnosed with autism.i am researching what these disorders come from and how they affect children.i would love to know how gabrielle is doing.you know the lord loves his children and he never commits mistakes and all that happens is for a mysterious reason.never give up no matter how bad the storm is.keep your hands held with the lord's that he will never let go.getting closer to him is the answer to prayers.

[gabrielle824]

Thank you for your comment. I am sorry to hear about your niece.

Gabrielle continues to struggle with her balance, motor skills, speech, and swallowing. She has good days and bad days, but for the most part, she is in good spirits. We appreciate your encouragement. We need it so much as we fight for her life.

I wish you and your family all of the best. We will keep your niece in our prayers.

[pradagirl777]

Your daughter is so beautiful!!! I hope god keeps sending you and your husband the strenght you need to keep fighting. As a parent I must admit it opened my eyes to not take anything for granted.

[gabrielle824]

Thank you. We definitely need strength - - fighting this disease is what we breathe, eat, and drink each moment of each day. It's exhausting, but we will never stop.

[lyndsayseed]

I have fought for 5 years for a diagnoses too ... this week Our son was diagnosed with niemann-pick type c he is just 7....

[gabrielle824]

I'm so very sorry. I know exactly how you feel. When you start breathing again and are ready, come fight with us. Email me anytime if you want a shoulder.

[Samantha913]

What a beatiful girl she is! I hope your fight for your daughters life is a seccessfull one! Don't give up hope

[gabrielle824]

Thank you! We will never give up on her. She deserves every ounce of fight we have and she's going to get it!

[itstastybacon]

Doctors are complete idiots, I finally got diagnosed with lyme disease, only because of a fluke, keep your head up and keep strong.

[gabrielle824]

It's amazing how much they don't know, isn't it? It's horrible to know that something is wrong and to have to fight for years to find out what it is. I'm glad you finally received a proper diagnosis. It's a huge part of the battle. Thank you for watching and for your support!

[GiseleVeilleux]

Sorry to hear that. Glad you finally got a diagnosis. Something Danielle fought and hoped for, for over 5 years. Thanks for the encouragement. Danielle and Gabi were interviewed on FOX35 Saturday. It was wonderful! They are airing it in San Diego and Houston as well. Finally! The interview is on Gabrielle's website.

[gabrielle824]

Mr. Donbrashear is a very angry fellow. His private message to me was the following:

"Hello. This may sound pretty horrible but please dont get me wrong. I had a son with Type c diabetes and decided to have him euthanised. I strongly suggest you just have another child and euthanise gabrielle, as it is the most humane thing to do. There is not much hope to save this poor child and it would be a menace to society keeping her alive. I hope you dont take it the wrong way."

Gabrielle's Mom

[GiseleVeilleux]

he's 23 years old, from auckland new zealand. and hates america. Whew, glad he's there and not here. It takes all kinds eh? Don't worry, we all know Gabi, everyone does. You've never asked, we've just all wanted to help you and your family. We love Gabi, who wouldn't? You have enough on your plate right now, don't worry!

Love ya!

G

[gabrielle824]

Thank you, Gisele.  This guy is clearly disturbed.

[katherinefreak]

Wow. I can't believe that someone would say such a thing to the mother of a sick child. I checked out his profile and this guy seems to have major issues. "Type C diabetes"? What a dumbass. He doesn't even know the different types of diabetes. I'm not surprised he knows nothing of Niemann-Pick disease.

[gabrielle824]

I too, was shocked that someone could be so cruel. I'm glad people can see through his ridculousness. Thank you for your comment.

[GiseleVeilleux]

Thanks for your comment!!!! it's great! Well said.

[Donbrashear]

Just ignore this video as it is a scam. The family wants money in order to buy a car or something similar. They are very selfish people and they are using their daughter to make money. Its a farce.

[gabrielle824]

Go to google and search "Gabrielle LaVerde ". I'm sure you'll find the Fox35 news story done on February 29, 2008.

We don't need a new car.

First he says this is a scam, then he recommends I euthanize my daughter ... which is it?

[ladymongoose]

Donbrasher, you are an idiot. What makes people like you tick?

[dancerina3133]

I would really like to help your daughter and others like her.. please give me some information on how I could do this. I just think you should know that I think you are a very brave person, and that I'm glad you put this video out here. It must have been very hard for you..

Don't give up!

[aliciacheeze2]

i have cerebral palsy cant walk troule with diabetes your is great bye

[fightforcure]

your video gives out a very powerful messege from you heart.

I'm 17 and hav progesive condition.i can nolonger walk.i have found myself arond young people with poor knowlage, although i am only 1 person i have always tryd to get peple to have more of an undstanding, i feel close to children with simlar dificulties

i try to speak for those younger than me who perhaps can't directly speak for themselves. i just want you to know there are people listening and thinking of you. xx

[GiseleVeilleux]

Your comment is quite profound, and I agree with you. You have a very important message that should be shared. I would like for your to send me more information about your situation so maybe, I could help your desire to speak out and share. Young people do have poor knowledge, but they are strong, sometimes stronger than their parents and other adults.

Gisele Veilleux

[gabrielle824]

I am so sorry to hear of your difficulty. By educating others, you are a shining example of strength to everyone - - those who struggle and those who are in a position to help those who struggle. We must all work together to find viable treatments/cures. You are a voice for the voiceless.

Thank you for taking the time to watch our video & write a message. Your kind heart is a gift to those around you. Write me anytime.

[branbradmeg]

Hi, Our daughter has Mitochondrial Disease...and our good friend had a little boy with Neiman Pick Type C....You can look them up here on You tube under Mito March....

Your daughter is precious...what a smile....Our daughter's disease is also a progressive disease......It's so hard to believe that this happens to people....disease I mean....facing that one day we will loose our children.....But I just take one day at a time.....and treasure the time we have left........

Keep up the fight..

[gabrielle824]

I'm so sorry to hear of your daughter's diagnosis. I am aware of Mito as our Geneticist thought for some time that's what Gabrielle has.

You are absolutely correct. One day at a time is the only way possible to fight these types of conditions. It's too hard and too big to do it any other way.

Thank you for your kind encouragement.

[DeceivedLust]

my hopes and prayers go out to your family. as the mother of a special needs child, I can only say never give up hope, never stop fighting. and even though sometimes you have to break, never stop putting the pieces back together. Gabrielle is a miracle. just as she is.

[gabrielle824]

Wow. What an encouragement. I so needed this today. I've been struggling with the "whys" lately ... and feeling like this is just too hard. Thank you for reminding me.

[magicalmiriam]

What a sweet little girl, she should not have to put up with such difficulties. I wish there was some way the doctors could help her.

[gabrielle824]

I agree. There is no worse feeling than watching your child slowly deteriorate. Not even knowing what it was for 4 long years made it rather impossible to fight. Now that we know, we are fighting with all we have. Thank you for watching this video. We hope that the awareness created here will help another family not have to suffer a long wait to receive a diagnosis. The sooner you know, the better.

[junkeemonkee]

My six yr old (Gracie) sat here and watched this and began to cry. I thank God every single day that I have two healthy girls, and wonder why this happens to such good people. All of you guys are in our prayers. You are doing the right thing and getting the word out there about Niemann-Pick. Gabrielle is so precious and beautiful. Just remember God doesn't ever give us more than we can handle. He has reasons for everything he does. Love & Hugs from Texas. Terri & Gracie

[gabrielle824]

Terri and Gracie:  Thank you for your kind words. Your compassion has brought tears to my eyes. My husband and I are amazed daily by the support we have been receiving. I only pray that our struggle will lead to another family not having to bear it. We will continue to fight for Gabi forever. Thank you for fighting with us through your awareness of NPC.

[mainemura]

i cried when i watched this,, my heart goes out to you guys especially gabby.... we are all withu guysand in our prayers

[gabrielle824]

You cannot imagine how much your kind words and prayers mean to us.  Thank you for watching our video. Allowing the public to simply become aware of this disease means so much to us. We would not want another family to go through what we have. Thank you for helping us fight on!

[GiseleVeilleux]

Gabrielle's fellow classmates have had bake sales, car washes, and delivered their jars of loose change and piggy banks, and in less than 3 weeks, they have collected $1,500. Please join us in Saving Gabrielle.

[destiny2215]

I couldn't imagine what you and her father are going through,I have children of my own and I thank god everyday for them being healthy.And when I do watch these kinds of videos I wonder why he puts this burden on parents.But god does do everything for a reason and she is a beautiful girl.I will pray daily for you and her and pray they find some way to give you lots more years with your daughter.God bless you and I hope we can all pitch in!

[gabrielle824]

Your prayers are so appreciated. As are your kind words. I can't thank you enough for watching this video. This disease is so rare & we want to bring it to the attention of the public so other families do not spend 4 years searching for an answer like we did.

[reckless1962]

donations for Gabrielle's treatments can be honored at fundable (dot) com.

[sorelittletoe]

A great deal of feeling in this movie, hope being one of them.

[gabrielle824]

Hope is what gets me through each day. Thank you for watching!

[Derm777]

My first thought was, "Where is God?" My second thought was, "Where was God?" Then God spoke to me and said, "I am in how you respond."

[gabrielle824]

How many times have I asked myself that question? Where is He?Why does she have to suffer? But I also know that God knew what He was doing when He gave her to us. We will fight for her. We will never give up. My heart is so full of pain I think it may burst. But every day I'm faced with a choice: give up, or do my best to care for her, give her what she needs, and try to find a way to help her. I always chose the later.

[SerSam73]

This response was beautiful...thank you.

[GiseleVeilleux]

I remember once when no one know what Autism was. We can create awareness, and find cures, this, after all, this is America.

[reckless1962]

I won't give up.

[SerSam73]

This movie poignantly maps out the plight that these parents have gone through to get the answers that they sought out. So much of their lives together have revolved around test after test. The love that drives this family is miraculous within itself. I hope they continue to find out all the options for Gabrielle and their story will remain in our hearts and prayers forever.

[gabrielle824]

While we have been through so much just to find a diagnosis, we always had hope. That hope and our love for Gabrielle gives us the drive to fight. Giving up is simply not an option. Our goal in life now is to do everything for her. And we will never give up.