Most people believe that the dementia it is a disease that only affects the elderly. However, one family is sharing the heartbreaking story of their daughter, who suffers from a childhood version of the disease called “childhood dementia”.
In 2020, the little one Haidyn Fowler diagnosed with syndrome Sanfilippo. It is a genetic condition that causes physical disturbances, leading to seizures, movement problems, great pain and discomfort, and eventually loss of bodily functions.
Patients do not live long as the life expectancy is between 10 and 20 years old.
Haidyn was born with disease and, although apparently healthys at birth, her body slowly began to change. The little girl is in pain almost constantly, she cannot speak and at the age of 7 she has mental capacity of a child 18 months old.
“The best way to describe ‘Sanfilippo syndrome’ is as childhood dementia or childhood disease Alzheimer’s because it affects the brain almost identically to Alzheimer’s disease,” Haydin’s mother, Carrie, told “Good Morning America.” However, he added that it is more than dementia or Alzheimer’s, because as he explains “not only attacks to brainbut attacks the central one nervous system and destroys the whole body.”
“So anything you think can go wrong with your body can happen with Sanfilippo syndrome,” he added. As she says tragic mother, it’s hard to look back in time at photos and videos of her daughter, from when she could still talk and walk without help.
Despite the tragedies the little girl is going through, the mother said her daughter is still “smiling, laughing, loving and he enjoys life” and has inspired her and her husband, Caleb, and older daughter, Braelynne, to try to find a cure for this horrible disease.
There is no FDA-approved treatment for Sanfilippo syndrome at this time, said the mother and family organizer fundraiser to further support research, to find a cure and save their child.
“He’s taught me so much, but it’s definitely the little things in life that we take for granted the most,” Carrie told “GMA.” “We love much stronger. And we struggle every day to be real happy for her despite all the heartache we have to deal with too. We’re trying to focus on being happy for her, because she deserves it.”
As Carrie said the world through the social media has been sensitized.
“Everything we’re doing is for Haidyn and we’re doing it in her honor, but most of all we’re fighting for the children in the future so that there’s a cure,” said the tragic mother.
“She fights so hard every day to keep going when most people would have given up long before, and I just… I’m proud of herso I’m also happy for those people who are proud of her.”
Source: News Beast
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