Banner's Battle with ROHHAD

33360114_1539111903476184_r.jpeg33360114_1538331965747688_r.jpeg33360114_1538332057885165_r.jpeg33360114_1538332283335304_r.jpegI am creating this fundraiser for my kind, loving, strong daughter Lyndsay and her family. Recently, Banner was diagnosed with Rohhad. A very rare and sometimes fatal disease, that has no known cure or treatment. ROHHAD is an acronym for rapid-onset obesity (RO) with hypothalamic dysregulation (H), hypoventilation (H), and autonomic dysregulation (AD). It is a rare, life-threatening syndrome that affects the autonomic nervous system (which controls involuntary actions like breathing and your heartbeat) and the endocrine system. This disease can only be managed. Their family will have many hardships to endure and I'm just hoping I can help in some small way to relieve some stress or burden from them. They will be making trips to Chicago, Maryland and possibly Seattle. With transportation, lodging and time out of work every little bit helps. Please read on for Banners story~ and thank you for your time <3

When Banner was around one and half years old he was diagnosed with ITP. This is a platelet disorder that caused him to bruise very easy and not be able to clot properly. this resulted in a 3 day stay at Hasbro, a round of IVIG, and a very cranky almost 2 year old! After getting the count up enough we had repeated visits to the doctor for blood work and treatments. Finally his numbers came up, butthe relief was short lived. Banner began to gain weight at an extreme pace just after his 3rd birthday and it became clear that there were other issues to be addressed. Because of the weight gain his breathing was also affected especially while he was sleeping.                                                                                                                                                                                            On Sept. 4th 2018 Banner's mom could not wake him up, when rushed to the hospital he had a temperature of 106 and believed to have had a seizure. Banner was intubated for 8 days and placed on a ventilator until the cold left his system. The doctors said it was a viral infection, but because of Banner's weakened immune system it manifested very quickly and put his nervous system in shock. Banner spent two and a half weeks in the hospital and is thankfully at home now, He has adjusted the the new normal at home, using a bi-pap machine while he sleeps.                                                                                                                                                                                                   After having a MRI, which its sad to say, we were hoping showed an operable cyst or tumor, that came back clear, and CAT scan that also came back with nothing pertaining to this situation, Banner has now been diagnosed with ROHHAD syndrome and will need continuous care for the unforseen future. This is a very rare disease with no known cure or treatment so it is very difficult to anticipate what his needs may be. We are asking everyone to share Banner's story and to thank the doctors, nurses and staff of Hasbro that helped Banner in his time of need. He is going to fight like heck, after all he is named after The Incredible Hulk, but any help is greatly appreciated. Thank you so much for reading Banners story!

Donations (0)

  • Jeanne Paradiso 
    • $20 
    • 15 d
  • Dave Andrade 
    • $20 
    • 1 mo
  • Jessica Gardner 
    • $20 
    • 2 mos
  • Anonymous 
    • $50 
    • 2 mos
  • Paul Garcia-Tafolla  
    • $20 
    • 3 mos
See all

Fundraising team (3)

Nancy Mazza-jeff 
Organizer
Warwick, RI
Brian Blanchette 
Team member
Lyndsay Sears 
Team member
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