Ben's Medical Fund - Fever Syndrome

$18,062 of $30,000 goal

Raised by 131 people in 41 months
We are Ben's parents, John and Carrie.  Ben was born, May 2012 and as soon as he was born, we heard his breathing was different.  From that day forward, we started our journey to discover with what Ben was going to face in life.  Through many specialists involved and lots of testing, we determined that Ben has two conditions that are unrelated but together have caused Ben to have life-threatening symptoms (tracheal and laryngeal malaysia & Mediterranean Fever Syndrome).  His condition is extremely rare and he's been diagnosed with a severe case, which is not curable.  Since birth, Ben has had over 65 trips to the hospital.  Every month, Ben has an inflammatory episode, which causes all his tissues to be inflamed, leading to fevers from 102 to 108, tremendous abdominal pain and joint swelling that may lead to a shortened life expectancy due to organ failure.  He also produces very thick mucous during fever episodes and has a difficult time eating and breathing (which is exacerbated by the weakened airway).  Due to both conditions, Ben has a severe speech delay.  Ben has been through a lot of treatment for both conditions.   We manage his day-to-day health, and try to get him to a special school funded by the state.   We're hoping through this campaign to raise money to support Ben's therapies, medications and caretakers when he can't go to school.   In addition, our next step is to arrange a trip out of state (NIH in MD), a specialty clinic for this sydrome.  We try to remain positive, while also trying to provide a quality of life that allows for him to have some normal experiences outside of a hospital/doctors and support our older son,  without having to leave our home and disrupt our lives any further.   Any help is appreciated and thanks for taking the time to learn about our family.
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Ben is now under the care of a doctor who worked at the National Institute of Health in Washington D.C. specifically for children with fever syndromes. She has the ability to order specific types of tests which will help determine the best treatment plan for him. Unfortunately if the he cannot handle the standard of care drug which is colchicine we will have to try an experimental drug which itself may have some unknown side effects; however the fevers must be controlled as well as the excessive mucus. We are attempting the colchicine again at a quarter dose and praying that it does not lead to stomach bleeding so he can tolerate this treatment. If this does not work, the experimental drug will be given by a nurse and the cost of this drug is $16,000 per dosage (our insurance will cover 90% making us responsible for $1600 per dose). We will send an update on how he does with the colchicine and if we need to move to the next step. Thank you all again for your support, it has really been a blessing and huge help to our family at this point for us!
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Benjamin has been in much pain this month which seems to be from the colchicine, we are taking him off for now based on the doctor's input today. We are going to meet with his specialists at the hospital tomorrow to determine next steps. He has blood in his stool and there is concern that the steroids he is on is also impacting his stomach lining. In addition he now has a secondary infection which requires him to be on antibiotic; the secondary infections are almost a monthly occurrence. There are so many factors that we have started the process to see a specialist for the Med Fever Syndrome in California, information can be found at the following website regarding where we are planning to go to obtain further expertise on his condition and his life which may require multiple trips:
http://gastro.ucla.edu/body.cfm?id=21 ( UCLA's FMF Program, which is an important national and international referral center for definitive diagnoses and treatments. Founded in the early 1960s by Dr. Arthur Schwabe (former chief of gastroenterology) and Dr. Sherman Mellinkoff (dean emeritus of the medical school), this specialty clinic is one of the largest of its kind in the Western Hemisphere, with more than 700 registered patients. It offers comprehensive interdisciplinary expertise with specialists ranging from medical geneticists and rheumatologists to nephrologists and immunologists (Wayne Grody, MD, PhD). Besides diagnosis and treatment of FMF, another primary goal of the clinic is the education of medical students, residents, and fellows; patients and their families; and the medical and lay communities at large)
This GoFundMe has gotten Ben recognized under multiple organization's including Jack's Kids, a NJ state program for children with Chronic Catastrophic disorders and Steps Together. We want to thank everyone for all of your support and prayers! Our goal is to ensure Ben has as much of a normal, happy life as possible while avoiding impact to his organs and life expectancy.
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Ben has been prescribed a daily medication for his condition called colchicine. The doctors were working to delay this as it is not recommended for children under 4 years of age, however his rheumatologist is trying to control the temperatures his fevers reach as these high fevers will be impacting his organs. His episode this month reached a 102 fever, however his pain seemed to worsen. The focus over the past few days have been ensuring that he is able to breathe and pain management. Thank you for your prayers and support.
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$18,062 of $30,000 goal

Raised by 131 people in 41 months
Created January 12, 2016
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$500
Anonymous
23 months ago
$200
Anonymous
23 months ago
$300
Anonymous
24 months ago
RL
$100
Rochelle Laws
24 months ago
$500
Anonymous
29 months ago
JN
$250
jocelyn Northcutt
29 months ago
CL
$100
Cora Labung
34 months ago
$20
Anonymous
34 months ago
BG
$25
bart gentile
34 months ago
SG
$50
Shaun Groves
34 months ago
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