Help find a cure!

HADLEIGH'S STORY
Hadleigh Maeve Banks or Haddie as we all call her is 3 years old. Haddie was originally given a prognosis of a 2-13 year life span.
  • Haddie loves to play with her big brother Keaton and their dog Mollie.
  • Her favorite place to visit is Target and she is a huge fan of Peppa pig, Blippi, Bubble Guppies, rainbows and all things Christmas all year round!
  • She also has found a new love recently....baking!
    • She watches baking videos on YouTube and has many cupcakes she is eager to bake!
Haddie is always smiling and radiates so much joy even though she fights hard every single day, you wouldn't know what she faces.
  • She was diagnosed at 2 months old with a disease called Pediatric Mastocytosis, although she has been fighting this since birth.
  • Masto is a very rare and debilitating disease, and is only found in 1 in 200,000 children world-wide.

Haddie is covered head to toe in thousands of lesions that are very uncomfortable and look like a rash, but don't worry only her smile is contagious! These lesions on her skin are extremely itchy and easily irritated even just by touching her. They can cause hives, flushing episodes, and anaphylaxis just by doing normal day to day activities such as going outside to play, having a bath or even just crying or sweating. She unfortunately has to spend most of her days inside and at home to avoid reactions and germs. Haddie cannot be vaccinated, so Mom and Dad, Mandie and Josh do their best to keep her safe and protected and have affectionately named their new lifestyle "Island Living".

Since she was diagnosed she has endured two bone marrow biopsies, hundreds of blood draws, various testing, hospital stays and ambulance rides. After her second bone marrow biopsy at 16 months old she was diagnosed with Systemic Mastocytosis which means mast cells have invaded her bone marrow and other organs. 
"We appreciate your eagerness to learn about Haddie and our family and we are so blessed by your generosity, support and prayers. We welcome any and all questions and visits. Please continue to keep Hadleigh and our entire family in your prayers as we face daily mountains and the unknown. We believe that Haddie will be a testimony to God's love and healing and not a statistic to her disease. We thank you from the bottom of our hearts! God bless you all". 
             ~The Banks Family 
Haddie's bone marrow, spleen and gastric organs are affected. She also has a second diagnosis of Diffuse Cutaneous Mastocytosis that is most present on her head. 
  • Haddie also has a genetic mutation called the C-Kit mutation. She is so rare her doctors have deemed her only 0.01% of the population with this exact diagnosis. 
  • She is under the care of pediatric oncology, immunology and allergy at Mott Children's hospital in Ann Arbor. 
  • She also sees a masto specialist from Boston that has agreed to oversee her rare case 3 times a year. 

She also may have to endure a bone marrow transplant in the future. With such limited options for treatment, The Banks' have started to explore holistic and natural treatments and remedies to try and alleviate some of Haddie's symptoms, keep her labs as close to normal as possible and avoid chemotherapy. This is all out of pocket costs for them. Although the Banks' heavily believe in prayer and stand firm that God will fully heal her. 
Pediatric Mastocytosis (MAS-TOE-CY-TOE-SIS is a rare disease characterized by the presence of too many mast cells in the skin, and possibly other tissues. Mast cells are instrumental in mediating anaphylaxis, and children with mastocytosis are at risk to develop both provoked and unprovoked episodes of anaphylaxis. Pediatric mastocytosis may involve the bone marrow and the gastrointestinal tract, and symptoms in children can vary greatly from child to child. Basic treatment includes the avoidance of known triggers, having injectable epinephrine available at all times, H1 and H2 antihistamines to control itching and gastric acid hyper secretion, and a mast cell stabilizer. IV steroids may be necessary to treat progressive, severe bullae in infants. Many children may not complain of specific symptoms, may not be able to identify or localize a symptom, or may have every symptom while others may have very few.
     *The Mastocytosis Society
Causes
  • It is not known what causes mastocytosis, but a genetic problem has been found in some patients.
  • It is not usually passed on from one generation to the next.
  • It is not contagious, i.e. it can't be caught by other people in contact with your child.