In 2014 the Matt Moscato Charity golf outing was held the same weekend as the Rochester High School class of 1989 25th reunion. The 2014 recipient was Lexi Mancini, daughter of Allyson Mancini (Blaker) class of 89. Lexi is a sweet 14 year old girl who needed our 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) for 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 the 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. When she turned 18, there was no way to know what would happen to her coverage. With the United States insurance in question we had no idea what the cost would and will be in the future.
In order to support Lexi, Thomas Richards Charity supported the Matt Moscato Charity golf outing; it was held on July 25, 2014 at Sylvan Glen Golf Course with lunch at Camp Ticonderoga in Troy, Michigan. The outing was a success and we raised a total of $16,778 that went directly to Lexi’s Trust to support her prescription medications, treatments, and medical bills. We thank you to all those who supported, Lexi couldn’t be supported without your help. Thank you for helping us help her.