2014 Matt Moscato Charity Golf

| July 28, 2014 | Reply

Lexi

This year the event will be the same weekend as the Rochester High School class of 1989 25th reunion. The 2014 recipient will be Lexi Mancini daughter of Allyson Mancini (Blaker) class of 89.Lexi a sweet 14 year old girl who needs your help with the rest of her life…..
Most girls her age have basic teen-age concerns: playing sports, having sleepover parties, and counting the minutes until the next school dance. When Lexi was one year old she was diagnosed with Turner Syndrome, a chromosomal disorder that affects many parts of the body. She produces no hormones of any kind. Lexi has been receiving growth hormone injections since she was two years old, and began taking estrogen last year. She will have to continue to take hormones (estrogen and progesterone) the rest of her life. Future concerns from Turner Syndrome are life-threatening heart issues and kidney problems, along with increased risks for certain cancers. This aliment alone would be enough for anyone to struggle a lifetime with; however,Lexi is also afflicted with Common Variable Immune Deficiency (CVID), a life threatening and incurable disorder. Something as common as the flu or pneumonia can lead patients to hospitalization and in worse cases, death. This creates many problems. First and foremost, the high risk of infection. She has to be wary all the time of what she touches, who she touches. She experiences additional side effects such as joint inflammation, reoccurring gastrointestinal pain, and weight loss. Future concerns from the immune deficiency are enlarged spleen and lymph nodes, lung tissue damage, autoimmune diseases, and an increased risk of cancer, especially cancer of the lymphoid system, skin and gastrointestinal tract. She takes numerous prescription medications on a daily basis along with numerous supplements.
She needs IV infusions of gamma globulin every three weeks for the rest of her life, which takes approximately six hours. Amazingly, Lexi is a 4.2 student. Her treatments, although necessary, are not pain-free, nor risk-free. Side effects range from mild headaches, which she experiences, to severe anaphylactic shock and death, but without them she could die.
She will never be “healed”.The family has changed health insurance four times since 2011. Insurance companies don’t want to cover her because her illness is considered “catastrophic. Every time her family changes insurance, there is a risk of missing a treatment. Insurance is billed on avg. 250,000 + a year the family has paid on avg. $28,000 a year, with no end in sight. With her turning 18 soon we don’t know what will happen to her coverage. With the United States insurance in question we have no idea what the cost will be in the future.any questions contact Tim Ciotti 3107040806 or tciotti@me.comGolf will be at Sylvan Glen Golf Course and lunch at Camp Ticonderoga

To register – click here

 

 

 

Category: Things we've done

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