Jake Cook, Stop The Bleed

Hello,Jake Cook, our son, a happy fun loving unbelievably sweet 4 year old boy needs your help. Jake has Severe Hemophilia B or less than 1% of factor 9 in his body. What this means is his blood does not clot properly and he can start bleeding internally with no warning or specific cause (most commonly the bleeding is inside a joint) . To make things worse Jake can't take any of the medicine for factor 9 without having a severe anaphylactic type reaction. The only medication he can take is Novo 7, this is a great medication BUT it only lasts 2 hours in the body and does not always work ( one dose may stop the bleed and the next may not work at all). This makes treatment extremely difficult. One of the main problems Jake has is he will start bleeding in his G.I. tract and by the time we see any symptoms he has lost half the blood in his body. His doctors have done every test and scope several times and continue to find nothing. Jake also has joint bleed's, we have been battling a bleed in his right elbow for 6 weeks. He has lost most of the use and range of motion in his right arm ( it is stuck at about 90 degrees).
We spend most of our time in the hospital.2 -3 weeks each month. Caring for a child with major health issues is rewarding as a parent but can be overwhelming financially. Living at the hospital is very expensive, just eating alone is a large expense. Add travel due to the hospital and doctors being in Jacksonville (we live in Fernandina) and the other expenses pile up fast. Now comes the fact that we are not able to work while at the hospital and have less time to work or generate new work when we go home due to caring for Jake. This makes things really tough because all of our bills and normal expenses continue along with all the extra expenses that go along with caring for a child with major healthcare issues. We have done everything we can to survive financially even with all the help our parents can give we don't come close to "making ends meet".
We are doing every thing we can to save Jake's right arm. We don't have insurance, we have medicaid right now but we are reaching their hospitalization limits . We have exhausted all our financial resources just trying to survive and care for Jake, weather its weeks in the hospital or home care. This week makes 3 out of the last 4 we have spent in the hospital and we don't know when he will be well enough to go home. Thanks to family and one of my amazing clients we have made it this far but we are out of resources.
We are not asking for a hand out, I have a Pressure Washing business and will take any work available. Scheduling may be tough due to my son's health problems.

Please remember to be thankful for every day with your family, good or bad, sick or healthy, just together as a family...

Hello ,
I felt like I needed to explain another part of the financial need. Apart from the expense of eating and living in a hospital away from home, which is really expensive. We are having another problem. We moved into my parent's garage (put up 2 walls installed a window A/C unit a space heater and laid carpet) to reduce cost of living not associated with the hospital. The only assistance we have is Jake is on Medicaid. We just found out he will no longer qualify for this medical assistance if we do not move out of my parents house. When you apply for medicaid your eligibility is based on household income. Even though we spend more in less than a week on Jake's care than my dad makes in a year, this is not considered.
I would love to just get a job with medical benefits to solve this problem. But due to the demand for my time to help care for our son this is not an option.


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Jeb Michelle Cook 
Fernandina Beach, FL
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