As her 3-year-old niece in Wisconsin is facing a rare and devastating disease, a teacher in Council Bluffs is seeking for assistance in raising money for research.
Olivia Stoop was diagnosed after a doctor in the metro area saw a picture of her, according to Olivia Stoop’s aunt, who resides in Council Bluffs.
The Sanfilippo Syndrome Type B has no known treatment. According to her relatives, it is similar to childhood Alzheimer’s.
In March, the world of a young, happy family was turned upside down.
Olivia, or “Liv,” is Stoop’s niece and goddaughter, and her Wisconsin-based brother and sister-in-law reportedly recognised anything was amiss with her.
Olivia’s aunt Traci Stoop stated, “Actually, how they explain it is like childhood Alzheimer’s.”
She was suffering from recurrent sinus infections, had a bloated stomach, and generally struggled with her health, according to Stoop.
The family didn’t know where to turn, according to Stoop.
However, a metro area doctor was able to put the family in the appropriate direction as a result of a social media post. According to Stoop, the woman “really approached the family after noticing the indications and symptoms of Sanfilippo in a photo.”
Olivia was identified as having Sanfilippo Syndrome Type B less than 24 hours later. This inherited brain illness in youngsters is characterised by degeneration due to a single missing enzyme. There is no FDA-approved therapy or cure, and it is lethal.
Parents of Olivia were contacted by our Milwaukee-based sister station. “She will gradually become mute as a result. so gradually losing her capacity to walk, eat, “Erin Stoop, Olivia’s mother, remarked.
Olivia will probably experience severe dementia as well as seizures. She won’t live into her teenage years, according to the doctors. “No mother wants to be told that her kid will die and that there is nothing she can do. Simply bring her home and show her affection. That’s not okay, “Erin Stoop stated.
The family wants to raise $1 million to fund a clinical trial looking at this extremely rare disease in the hopes that it may help save Liv. “This will be our task. For her, we’re going to fight. She is due it. Those more youngsters merit it “Erin Stoop stated.
- A teacher in Council Bluffs is soliciting donations for Sanfillipo Syndrome research
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