This Baby Girl Has Alzheimer's ... & Parents Who Refuse to Give Up

baby with alzheimer's
Hope for Marian/GoFundMe

There's an indescribable amount of joy parents feel raising their children and seeing them grow and reach milestones -- often without a care in the world. Sadly, that's not the reality for everyone. There are families out there who are in a battle just to have these opportunities we so often take for granted, and it shows just how precious life really is. My heart is with Sara and Paul McGlocklin, Los Angeles parents whose 18-month-old daughter is battling a rare form of children's Alzheimer's, an incurable disease that will likely take her life.

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Mom Sara reveals on the Hope for Marian GoFundMe page that she and her husband noticed their daughter Marian had noticeably thin legs and behaved a little differently when she was born -- but they had no idea their sweet girl was showing signs of a deadly disease.

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"In September, Children's Hospital Los Angeles (CHLA) began to suspect a likely untreatable storage disorder after detecting an enlarged spleen combined with ongoing mild muscle weakness," the mom reveals on Marian's GoFundMe page. "But Marian didn't fit the picture. She was making progress. She was getting stronger, not weaker, not dying. We desperately sought every specialist we could in order to find a diagnosis. Fearfully, we did a battery of tests and awaited the results."

Sadly, little Marian McGlocklin was recently diagnosed with Niemann-Pick disease type C (NPC), sometimes referred to as "children's Alzheimer's," which affects her ability to process cholesterol and other compounds and can eventually cause a loss of motor skills, vertical gaze palsy (or inability to move eyes up and down), and even seizures. The National Niemann-Pick Disease Foundation notes this disease is almost always fatal -- often claiming the lives of children before age 10 -- as persons who have NPC often battle respiratory failure, severe liver disease, and even dementia.

"Eventually the muscles get stiff and the patients are unable to walk," Dr. Patricia Dickson, chief of medical genetics at Harbor UCLA Medical Center, tells ABC 7 News. "Speech becomes extremely difficult and eventually they do die from their condition."

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How heartbreaking!

Since learning their daughter's diagnosis, the McGlocklins -- including their 4-year-old daughter Emily, who hosts lemonade stands in her sister's honor -- have been doing what they can to raise awareness and finances for a clinical treatment that will help slow down Marian's symptoms. Thus far, they've been able to raise a little under $60,000, which the family hopes can be used to find a cure once and for all.

"I really believe that Marian is either going to be one of the last kids to die from this disease, or one of the first kids to survive it," Mom tells ABC 7 News.

The money will also go toward travel expenses, as the mom reveals on Marian's GoFundMe page that extensive traveling will be required for the 18-month-old's treatment. "We are going to be flying back and forth to Chicago every two weeks from Southern California with Marian for several weeks or possibly months to prevent and protect her body from further damage until the treatment can be transferred locally," notes Sara.

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I'm at such a loss for words when I hear stories like this. As a mom -- with a son only a couple months older than Marian -- I feel my heart hurting for what this sweet girl will endure, and for her family who will fight with everything they have to keep her alive and healthy. 

It pains me to think anyone would have to experience a disease like this, let alone a child. And the thought of Marian's having dementia -- and not being able to recognize her loving parents and sister -- just breaks my heart so much.

Yet, in this time of uncertainty and pain, I still see so much resilience and determination in these parents' eyes to fight for their little girl ... because it's not over until it's over.

This family will be in my thoughts and prayers.

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