Holiday Gala For Hadleigh Fundraiser
Time & Location
About The Event
Please join us to help a special little girl by the name of Hadleigh & her Family at our Holiday Gala. The night will feature Live Music, Appetizers, Dinner and Raffles, all benefiting this beautiful child!
Cash Bar Available
Delicious Menu by Chef Caleb J. Sakel
Cheese, cracker, & fruit assortment
Spring mix salad w/tomato, cucumber, red onion, balsamic dressing
Sous vide beef medallions w/ red wine sauce
Sous vide chicken breast w/Marsala sauce
Roasted vegetable risotto
Roasted heirloom carrots
Roasted waxy potatoes
Sautéed har vert
"Haddie" loves books, puzzles, babydolls, Frosty the Snowman, Santa, Paw Patrol, Doc McStuffins and Blippi. She adores her Mommy, Daddy, big brother and their pets, especially their dog Mollie. She loves nature and exploring outside. She plays with their chickens, swings with her big brother and Haddie LOVES to swim when she is able to be outside. Hadleigh loves music, especially Justin Timberlake, Bruno Mars and anything country. She is happy most of the time, although she is chronically itchy and in pain, this girl has a cup that is half full!
THE UNFORTUNATE TRUTH:
Hadleigh is now 2 years old and was diagnosed with Uticaria Pigmentosa (UP) a form of Subcutaneous Mastocytosis at 2 months old in 2016, although she has been fighting this rare disease since birth. Pediatric Mastocytosis is a rare and debilitating disease, and is only found in 1 in 200,000 children world-wide. There is little to NO funding for research and currently NO CURE. It is characterized by the presence of too many mast cells in the skin which are produced by the bone marrow. Masto affects the amount of histamine that is released into the body, which most of us do to protect ourselves. Masto kids, unfortunately, release too many and this affects the skin and may eventually affect the organs. It causes lesions on the skin that are extremely itchy and easily irritated. They cause hives, flushing episodes, and anaphylaxis. It can present in other places, including the liver, heart, lungs, and gastric organs when systemic (Which is what Baby H has). Treatment ranges from steroids and antihistamines, to chemotherapy and depends on the type and severity. Baby H’s bone marrow IS involved and she tested positive for the C-KIT mutation gene which is only found in systemic mastocytosis. This disease also needs to be closely monitored as it can become cancerous leading to several types of leukemia.
WHY HELP IS NEEDED?
Mom and Dad are constantly on high alert, watching for signs of anaphylactic shock, irritable moods from chronic hives/itching and joint pain, lack of sleep, flushing, heat and cold sensitivity, slow weight gain, and gastric issues. She will require: daily meds, monthly treatment by a team of doctors, including oncology and immunology, and is monitored by a masto specialist from Boston. She is currently receiving treatment from Mott Children's Hospital in Ann Arbor.
For more information please follow link below.