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This fundraiser ended on 05/01/12

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Family & friends of Braden Sarver are uniting to raise money for medical expenses.

My name is Braden and I'm 6yrs old. I started getting sick at birth, after a traumatic birth. I was diagnosed with hypoxic ischemic encephalopathy, which is where the brain doesn't receive enough oxygen. I was in and out of the hospital several times a week. I was put on an apnea monitor at a week old, because I would quit breathing. I was always sick. Finally, I was hospitalized for a week and a half when I was 2mths old, weighing the same as I did at birth. I was failure to thrive. I had my first scopes this time and was told I had milk and soy allergies. So, they started me on my special formula called Neocate. This formula has saved my life and I currently still take this. I finally started gaining weight but was still very sick. At, 3 mths, I was waking up covered in hives. At first, we were told they were bug bites, but they never went away. I had a skin biopsy done and at 4mths, was diagnosed with a disease called Mastocytosis. This was very scary for my mommy, as the disease is very rare and most doctors don't even know about it. Mastocytosis, is a disease in which there are too many mast cells in my organs and tissues. Mast cells are produced naturally in every body, necessary to assist in fighting possible foreign threats to the system. Individuals with mastocytosis have an abundance of mast cells and the mast cells do not work properly in reaction to a trigger, sometimes unknown. Because of this, I have brown spots, smiliar to hives, all over my body, that spread and turn bright red and sometimes blister when I'm having a flare. They've also spread to my internal organs as well. Common symptoms of Mastocytosis are skin lesions, abdominal discomfort, nausea, vomiting, diarrhea, infections, ear, nose & throat inflammation, anaphylaxis, episodes of very low blood pressure (including shock), faintness, bone & muscle pain, headache, ocular discomfort & malabsorption. There are days that I cry in pain and there's nothing my mommy can do to help me.
After my diagnosis of Mastocytosis, I still stayed very sick. We couldn't figure out why. I was still having severe, daily vomiting and diarrhea. Everything I ate made me sick. I hadn't gained any weight in over 8mths. At 15mths old, my mom demanded another scope. This is when I was diagnosed with Eosinophilic Esophagitis, Eosinophilic Gastritis and Eosinophilic Colitis. Eosinophilic disorders is an autoimmune disease. These occur when there is a malfunction within the immune system that causes the body to mistake foods for parasites or invaders, causing eosinophils, a type of defensive white blood cell, to attack different parts of the body. It’s about as fun as it sounds. These disorders can have effects on every part of the digestive tract and can lead to symptoms including severe stomach and chest pain, vomiting, dysphagia, nausea, cramping, impactions, diarrhea, and damage to the organs themselves. The older kids describe this pain as battery acid or bleach being poured down their throats. After getting this diagnosis, I later found out I should have been diagnosed with my first scope at 2mths. where I had high levels of these damaging eosinophils all the way through my digestive tract.. I got my feeding tube at 18mths old. I now get all of my nutrition through my G-tube. I am on a feeding pump 24hrs a day.and I recently lost what safe foods I had. At diagnosis I had ulcerations and lesions from my esophagus to my small intestine. I have to have an endoscopy and colonoscopy with biopsies of my whole digestive system every 6-8 weeks to be sure that the eosinophils are not attacking the proteins in the food I am trialing. I've had a rough last couple years and due to symptoms, the doctors won't allow me to trial anymore food. I have also developed a condition, which causes very high quantities of eosinophils in my blood… which can damage all of my body organs, not just my digestive system. I have a lot of pain almost every day, and am often dizzy, achy and nauseous.I have been receiving treatment at Cincinnati Childrens Hospitals Center for Eosinophilic Disorders Clinic. Where they have one of only 4 centers for pediatric eosinophilic disorders in the country. I have many visits to Cincinnati Childrens. … There I see my gastrointestinal doctor, an allergist, an immunologist, a nutritionist, a urologist, a neurologist, a cardiologist, a pulmonologist, an ENT, a geneticist, developmental peds clinic, special needs clinic, infectious disease, orthopedist, a feeding team, and an ophthalmologist. I also have a specialist just for my Mastocytosis, that I have to travel to Boston to see. He and his partner are the only specialists for this disease in the country. All my doctors work so hard to help me feel as good as I can, given the knowledge they have, the medicines available and the research conducted. I also am in Occupational, Speech and Physical Therapy weekly. I've lost count on how many surgeries and hospital admissions I've had.

Other diagnosis I have are a congenital heart defect called Bicuspid Aortic Valve. I'm told my heart is ok now and I shouldn't need surgery until I'm of adolescent age. I also have Epilepsy, hypoxic ischemic encephalopathy, Asthma, GERD, Dysphagia, Dyspraxia, Sensory Processing Disorder, Hyponatremia, Osteopenia, Meatal Stenosis, Hypotonia (face/trunk), Hypertonia(arms/legs), Developmental & Speech Delays, PDD-NOS, Anxiety, ADHD, also possible Autonomic Disorder, Hypoglycemia, Mitochondral Disorder, NeuroMuscular Disorder(currently being looked into.) I have way too many allergies to list and am currently on about 30 medications.

I'm doing this fundraiser to help with medical related expenses and our need to see his Mastocytosis specialist in Boston. We have an appointment in October. We also have recently lost Braden's medical coverage and have bills exceeding $75,000 in medical for Braden.


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