Café holds blood drive in memory of owner’s daughter
2023年9月15日 · Greenhouse Café hosted a blood drive Sept. 6 in memory of Haley Daquara, daughter of Bobby Daquara, the café’s owner. Haley was diagnosed with Hurler syndrome when she was six months old and died in 2013 at age 10.
Greenhouse Café owners prep for 64th blood drive in memory of …
2022年10月12日 · The couple’s daughter, Haley, was born with a rare disorder called Hurler Syndrome. People with Hurler Syndrome usually don’t have enough of a specific kind of enzyme in their blood to break down the fats and sugars they need to thrive — and many, like Haley, battle myriad health issues as a result.
NY Blood Center, Daquara family host blood drive at Greenhouse …
2023年9月6日 · Hayley Daquara was diagnosed with Hurler syndrome at 6 months old. During her life, she had three open-heart surgeries. The last one caused complications that ended her life at just 10 years old. "She needed red blood cells, she needed platelets, and she was blood product and platelets dependent for a couple of months.
Brooklyn father hosts blood drive in honor of his late daughter - PIX11
2023年9月6日 · He’s been holding blood drives there for over a decade after seeing how essential blood donations were for his daughter, Haley Daquara, who died in 2013 at the age of 10. As a baby, Haley was...
It’s a plane…it’s a star…it’s Haley’s Comets! - Brooklyn Paper
2017年10月5日 · So what better way to honor Haley, who was just 9 months old when she was diagnosed with a rare genetic storage disorder called Hurler Syndrome, than to donate this year’s blood where it was needed most. Through the rounds of transfusions and treatments Haley went through she never stopped in living her mantra of “I can do it.”
Haley’s Comets lands at Greenhouse Cafe for its 50th blood drive
2018年7月5日 · Greenhouse owners Bobby and Kelly Daquara’s daughter Haley inspired the drives that are held at the restaurant. Haley, who passed away, was born with Hurler Syndrome, a disease that required frequent bone marrow transplants. Seeing others’ donations help Haley drove home the need for more blood drives, Daquara said.
Mucopolysaccharidosis Type I: Hurler Syndrome - Symptoms
Hurler syndrome is the most severe form of mucopolysaccharidosis type I, a hereditary lysosomal storage condition. Cells can't break down sugar molecules, which affects how they function. Symptoms are life-threatening, target your bones and organs, and could cause issues with cognitive development. Treatment increases life expectancy.
NEJM：这种10岁前就会死亡的罕见病，被慢病毒基因疗法修复了
2021年11月24日 · 近日，《新英格兰医学期刊》 （NEJM） 发表了一项题为： Hematopoietic Stem- and Progenitor-Cell Gene Therapy for Hurler Syndrome 的临床研究论文。 8名 Hurler综合征 患儿接受了 自体造血干细胞或祖细胞治疗 ，这些细胞经过了编码 α-L-艾杜糖醛苷酸酶 的 慢病毒 …
Felicity Wallace Hurler Syndrome Journey - GoFundMe
2023年9月9日 · On June 23, 2023, Haley gave birth to their first child, a beautiful baby girl, and my niece, Felicity Wallace. Shortly after, testing confirmed that Felicity had a rare genetic disorder known as Mucopolysaccharidosis type I (MPS-1) also known as Hurler Syndrome.
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