
 
 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. 
 
 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. ||||| Most kids set up a lemonade stand to raise money for a new toy or bike, but 4-year-old Emily McGlocklin is raising money to help her sister who is battling a rare disorder.Emily's little sister, 18-month-old Marian, was diagnosed with a fatal genetic disorder called Niemann-Pick disease type C, which is sometimes referred to as childhood Alzheimer's."Eventually the muscles get stiff and the patients are unable to walk. Speech becomes extremely difficult and eventually they do die from their condition," said Dr. Patricia Dickson, chief of medical genetics at Harbor UCLA Medical Center.The diagnosis for the incurable disease nearly crippled the McGlocklin family. Father Paul McGlocklin said his daughter is a happy, active and friendly child."To hear those words and know that something is wrong with her - it's devastating. It's something you just don't want to think about," he said.But they found strength in fundraising for a clinical treatment that could slow the progression of the disorder."We really want to raise money to help fund further research, to find a cure and spread awareness," mother Sara McGlocklin said.Through many events, the family has raised more than $50,000 for Hope for Marian in just one month. Genetic researchers said this type of family-driven funding is what pushes science forward."The partnership of families and science is something that is really valuable and has pushed the field forward far faster than it otherwise would have gone," Dickson said.Sara said she believes Marian will either be the last child to die from the disease or the first one to survive it.If you would like more information on the disease or learn how you can help the family, you may go to gofundme.com/hopeformarian
– One family has just gotten the kind of news every parent dreads, reports the Stir: Their 18-month-old daughter has an extremely rare, incurable, and fatal genetic disorder called Niemann Pick Type C, which is often referred to as childhood Alzheimer's. But there's a new drug currently in clinical trial that has extended the lives of mice with the disorder five-fold, and the McGlocklins are in a race against time to get their daughter Marian into the program and hope that the science progresses faster than the disorder. "Eventually the muscles get stiff and the patients are unable to walk," an expert at UCLA tells ABC7. "Speech becomes extremely difficult and eventually they do die from their condition." When Marian was born, her parents noticed she had very skinny legs and muscle weakness. After performing a battery of tests, her doctors learned that her cells can neither process nor dispose of cholesterol, leading to a toxic buildup in her body that looks much like dementia. Only 500 children have ever been diagnosed with it, and many of them die before their 10th birthday, per the National Niemann-Pick Disease Foundation. Marian's parents are more than a third of the way to their $150,000 goal on GoFundMe, which they will direct toward research. They believe scientists are closing in on a cure, and say Marian will be either one of the last to die from or one of the first to survive the disease. (The same disorder has made this teen operate at the level of a toddler.)