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Hope 4 Hadleigh Medical Fund

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http://www.hope4hadleigh.com BABY HADLEIGH:
Baby H 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:
She is almost 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.

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. Please visit Haddie's website that her amazing fundraising team has put together at:
www.hope4hadleigh.com


HOW YOU CAN HELP
1.      Please pray for Hadleigh & the Banks family.

2.      Share this story on Social Media with a message.       

3.      Donate what you can to this Gofundme page.  

GRATITUDE
The Banks family has gone down to one income due to the medical obligations of Masto and are having a difficult time paying the hospital bills that are coming. They have to pay thousands of dollars BEFORE lifesaving testing can be performed. Please help me in supporting the Banks Family today! Thank you and God Bless! #prayforbabyH
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Donations 

  • Mary Marlatt
    • $20 
    • 5 yrs
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Organizer

Jamie Smith
Organizer
Holly, MI

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