I never thought I'd be setting up a Gofund me for my 3 year old son. This has devastated our family in the two short days we have had to process this.
My son Braydon, 2 at the time was sick last October with the regular common cold, shortly after medications were given and used up his behavioral changed. He was waking up each night soaked from head to toe and had the shakes. I brought him to the doctors back and forth for over 3 weeks. He was peeing through a box of diapers a day. I knew this wasn't normal. Finally, we were referred to a pediatric endocrinologist. We admitted him into the children's hospital the week of Christmas 2016 and started a water deprivation test, we then knew it was Central DI. (DIABETES INSIPIDUS) WHICH IS RARE!
"The disease happens when the body doesn't make enough of the hormone vasopressin, which controls how much urine the kidneys put out. Without vasopressin, the kidneys can't work properly. As a result, the body loses a lot of water, quickly, in diluted urine. This makes people very thirsty, so they drink lots of water."
Anyone can get central DI, but it's not common. Only about 1 in every 25,000 people gets it.
We thought with the right medication he'd be okay. Which he has been until August 17th of 2017
Braydon had a routine sedated MRI, lab work, and X-ray
We got a call on 8/17/2017 after Braydon’s MRI that there is a tumor above the pituitary gland and it's bigger than it was in December. She did say nothing was seen in the full body X-ray which is great news but, she believes it is LCH.
Langerhans cell histiocytosis (LCH) is a rare disease involving clonal proliferation of Langerhans cells, abnormal cells deriving from bone marrow and capable of migrating from skin to lymph nodes. Clinically, its manifestations range from isolated bone lesions to multisystem disease.
Braydon has Diabetes Insipidus, Adrenal insufficiency, and Thyroid issues due to LCH. He will most likely under go Chemo. We don’t have all the hormonal tests back but his doctor is pretty sure it is LCH. Either way Braydon's treatment will most likely be chemo and have lots of hospital visits in his future.
Were not asking anyone to donate, even if you can say a prayer for him that will be greatly appreciated. David is the only one working for the four of us, the funds would help him emotionally and pyshically support me, our daughter, and Braydon while we go through this difficult journey.