Leukodystrophy

[OhHughJorgan]

My 5 month old baby girl has been diagnosed with a luekodystrophy but we don't know which one yet. Thank you for posting as information on this is hard to find in Australia.

[zackkcaz21]

My daughter may have this, shes only one month old and MRI scans show that her white brain matter is very low..she has no symptoms as of right now other than she's not feeding correctly. She will drink a bottle like normal, but sometimes only drinks 10-15 ml and we tube feed the rest. Can someone with this please email me? The doctors are all clueless and was not expecting this before the scan. Thanks:)

[AngelaPalotes]

Dear Catherine: Our beloved daughter Lucia passed away last October 12, 2009 ... how sad it is that we could not do anything else to keep her with us .. a hug for you and for all children and families who suffer Leukodystrophy.We have created in Colombia the "Lucia Wings of Hope" foundation, to help families and beautiful children who suffer this terrible disease

[gabbb432]

A good friend of mine was diagnosed age 8 with cerebral palsy, he is now 16 and has been rediagnosed with MLD. He is inspiring because although he has been told his life expectancy is significantly reduced and he will never grow up and have a family, his main concern is that he will not be able to be a PE teacher because of paralysis of his legs. I wish everyone going through this the best.

[BDproductions696]

and my aunt made a website fightald (.) org

[BDproductions696]

but i have the adrenoleukodystrophy which effects the adrenel glands which breaks down fatt and now i cant eat saturated fats and if i do it eats away my myelin i have to take alot of drugs like cortizone and florineff are perscribed and i have to take about 7 more non perscribed i was diagnosed at age 3 and my life is almost normal i just cant eat fats and try not to get hurt

[catherinespark]

Hi, glad you're doing well and that you have such a normal life and caring family. I can't eat protein and need to take amino acid supplements and calorie supplements as a result. Something in common though probably a totally different experience :-)  All the best!

[bigdiesels]

Im doing a project about ALD for my course and this is a Terrible disease I couldnt image what these young children go through its just breath taking, its unreal, this disease and deadly. Its sooo sadd! Id give the world to them if I could.

[catherinespark]

So would I....good luck with your project, and glad if the video helped. Any kind of awareness of it is brilliant so well done for the project.

[BDproductions696]

i actually have this disease i was diagnosed at 3 years old when my mom met her mother for the first time she found out what i had

[boonzreiner]

breaks my heart

[redfred1500]

God help them, I don't understand how this can happen to wee children its just not right :(

[catherinespark]

I know :( Are you from Scotland by the way? I come from Inverness!

[mafaldacrumbwitty]

All of you are in my prayers

[manda122880]

ths disease is sadlytake our childen my nehew wasdignosed wih ALD at the th age of 6 he fought a long andhrd bttl on July 10,2009 h ost the battle he wa at the tender age of 7

[Cantild3x]

yo creia que esta enfermedad solo afectaba a varones o. o

[felecia1970]

thank you for this....my daughter was diagnosed with this...we got the results yesterday...my heart hurts.. she is only 6

[BDproductions696]

i was diagnosed at age 3 with adrenoleukodystrophy butt now im 14 and living healthy and i wish you lots of good luck with your duaghter

[VideoChick18]

Leukodystrophies are terrible.. I have worked with the ULF for several years and have learned how devistating these diseases..

[0192837465laksjdhfg]

sorry I didn't mean to post more than once

[0192837465laksjdhfg]

There is a clinical trial going on for kids with krabbe disease, tay sachs, etc that involves umbilical cord blood transplants

if you go to the clinical trials website and search for leukodystrophy you should be able to find it or you could message me if your interested, I hope this could help someone viewing this video.

[dela8285]

my son died 3 months ago he was diagnosed with leukodystophy but docters said they werent sure he was full of life and always smiled and laughed but he past away cuz he couldnt breath and got really sick and could handle all the medicine any more rip my baby boy

[AngelaPalotes]

Gracias por hacer este video. Mi hija sufre Leucodistrofia Metacromatica. Fue diagnosticada a los dos años y mañana cumple once!!! Qué milagro y que niña tan valiente y amada tenemos. Gracias por publicar este video. Es importante seguir investigando, que la gente sepa lo que pasa...que podamos entre todos hacer algo..

[catherinespark]

Gracias por el mensaje. ¡Estoy alegre ella en buena salud!

[ongoy4]

thanks for posting this video!! it made me realise how important it is to spend more time with my 21 year old sister who is diagnosed with leukodystophy.

[RoosterWWoman]

I am a home care nurse and care for a client who has Krabbe Disease, one of the leukodystrophies. This is a very sensitively done video and accurate. I appreciate your putting it on You Tube so others can become aware of the devastation of this deadly and incapacitating disease. Hpefully with increased awareness there will come a cure. Hopefully soon. I ache for my client and her family.

[matthewscottdale]

hello,my name is matt. i had a daughter diag with metachromatic leukodystrophy. she passed away at 10 years old. my heart goes out to the people and families affected by this disease. god bless, matt

[mumtoDylan]

Thank You! My son Dylan, 5yr, has an unclassified leukodystrophy. Some may call it torture, but i call it inspiring to witness other peoples testimony to this awful disease that hits our loved ones

[pixie1310]

Why don't they do gene therapy then?

[catherinespark]

There are a few reasons why gene therapy wouldn't be a full cure;

1. It can't reverse the damage already done; Paralysis, blindness and muteness still leads to life threatening infections and the question of quality of life (though parents can hugely help improve this).

2. Gene therapy is not routinely used on any genetic disorder yet, as far as I know, because intervening with DNA has possibly caused cancer and definitely caused fatal immune reactions.

However, it's an option being developed

[CaitlinG1207]

My Daughter Gemma died of Metachromatic Leukodystrophy whem she was 9 years old.Thank you for doing this video.

[ms21]

hallo kann mir jemand sagen wer dieses schöne lied singt und hat jemand den text davon

gruüße

[catherinespark]

Übersetzt auf Babel Fischen; Katie Mellua singt dieses Lied