Leukodystrophy

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thelonelywriter

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@thelonelywriter

MightyTogether 1y

I'm new here!

Hi, my name is thelonelywriter. I'm here because my daughter has an undiagnosed white matter disorder, a suspected leukodystrophy and early infantile regression. I am still looking for answers.

#MightyTogether

1 reaction • 1 comment

Post

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MightyTogether 1y

I'm new here!

Hi, my name is mamabear5. I'm here because my 13 month old daughter has severe hypotonia, hypomyelination, and suspected leukodystrophy. We are on a journey to find her diagnosis and learning how to live each day with grief and tons of love.
#MightyTogether

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Story

Mother hugging daughter.

Mother hugging daughter.

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Alexander Disease

3y

What I've Learned About Bravery as the Parent of a Child With a Degenerative Disease

When my daughter was diagnosed with a rare, neurodegenerative disease in 2015, the old me died. I lost myself in the endless pursuit to save her. I began to dive into the leukodystrophy community to find anything and everything I could to help her. I spent most of my time researching and making phone calls [...]

Story

Michele and Elouise in the hospital

Michele and Elouise in the hospital

Michele Levoir Sloan

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3y

How My Daughter Made Me Into an H-ABC Leukodystrophy Expert

When we first heard of H-ABC leukodystrophy, there was very little data available. In fact, although the condition had been under investigation in Europe, it wasn’t until 2014 that the gene causing the defect was identified in the U.S. However, Elouise had symptoms that were progressing for many years before we finally received the diagnosis [...]

Story

woman with hands clasped, morning sun in the background

woman with hands clasped, morning sun in the background

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3y

How Grief Can Transform After Your Child's Life-Limiting Diagnosis

The minute you learn your child has a diagnosis of a terminal illness, you die too. You are not literally dying. It is a psychic and emotional death since your old life has come to an end, and the person you were must cease to exist. That is why the weeks and months after learning [...]

Story

6 Reasons Why Social Isolation Is Nothing New for My 'Rare' Family

6 Reasons Why Social Isolation Is Nothing New for My 'Rare' Family

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3y

6 Reasons Why Social Isolation Is Nothing New for My 'Rare' Family

We have been in strict social isolation now for 157 days. My husband is working full-time at home and I am working part-time. Our three kids, ages 14, 12 and 9 are home with us. Our youngest son lives with a rare brain disease called vanishing white matter disease (VWM). He can’t stand, walk or [...]

Story

the parents of Elouise and Elouise, sitting and smiling

the parents of Elouise and Elouise, sitting and smiling

Michele Levoir Sloan

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3y

How We're Holding On To Hope for Our Child With a Rare Disease

From an outside perspective, it would seem that our situation, in terms of parenting and caring for a child who’s sick, is very difficult. However, the truth is that this didn’t happen overnight. Like anything else that is handed to you in life, there is a process you go through: First, you react to the [...]

Story

a colorful butterfly leans delicately on the shoulders of a woman

a colorful butterfly leans delicately on the shoulders of a woman

The Calliope Joy Foundation

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4y

How to Cope With the Grief of Your Child’s Rare Disease Diagnosis

The minute you learn your child has a diagnosis of a terminal illness, you die too. You are not literally dying. It is a psychic and emotional death since your old life has come to an end, and the person you were must cease to exist. That is why the weeks and months after learning [...]

Story

Sam in his wheelchair, smiling

Sam in his wheelchair, smiling

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4y

The 'Invisibility Superpower' of My Child's Wheelchair When He's Out in Public

Everyone can recognize wheelchair users. What most people don’t realize is that wheelchair users also have superpowers — the main one being invisibility. This is a strange phenomenon you can only experience when using a wheelchair or when spending time with a wheelchair user. It appears that once a human being sits in a wheelchair, [...]

Story

loving mother and kissing little baby play at sunset

loving mother and kissing little baby play at sunset

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6y

To My Daughter With Leukodystrophy on Your First Birthday

Dear Adelyn, Oh baby girl, what a year we have had. It’s the eve of your first birthday, and here we sit, ready to spend that special day in the hospital tomorrow, of all places. I’ve got tears in my eyes, but they aren’t for the reasons you might think. I’m not feeling sad we’re in the [...]