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My name is James Cochran and my wife's name is Allison. We found out Monday June 27th 2016 that our 15 month old son Jackson needed immediate testing done that day for a rare disease called MPS. After doing extensive research on the Metabolic Disorder for hours that same night it absolutely crushed us and brought our lifes to a hault! Praying and wishing the doctors were wrong and made a mistake for days until we received the results Thursday the 30th...... @ 12:45 pm during my lunch I called the doctors to see if the test results were in and they said "yes they were hold on one second". That was the longest minute in my entire life!The nurse then got on the phone and told me we have already sent a referral to the Geneticist at Cook Childrens, test results were positive. Unfortunately, we would not be able to be seen until July 6th and then the process would start with one blood test after the other. Which could take a total of 6 weeks to know what we were dealing with, before starting treatment
since there are many mutations of this MPS disease. That would not be good enough for my son because with this disorder time is extremly crucial if we want him to live and have a chance at a decent quality of life. So, I decided that day I would put this on my back as a dad and not stop until we got the quickest and best help in the nation. On my way home on June 30th I stopped by the Doctor who found this disorder in my son and was able to speak with him for over 20 minutes in his office. During that time he explained that most likely Jackson had a severe case of MPS 1 "Hurler's syndrome"given all the evidence found. Again a very crushing blow to my family. This disorder is so rare only 1 and 100,000 births are affected. Since that talk with our doctor I have been on a non-stop prusiut to find my son the best help. I believe I have found that help in the form of University of Minnesota Masonic Children's Hospital. There is a researcher by the name of Paul Orchard who is Globally
recognized for his research in Metabolic Disorder's. I have been able to send him many of email, test results, talk to him/team and give them information about my son. Which we found out Friday the 1st @ 6:17 pm the following day that our insurance was accepted for the consultation with Paul Orchard starting July 11th. My son will be evaluated from head to toe by groups of specialist to see if his body is healthly enough to receive the only treatment avaliable to save his life, as well as giving him a decent chance at a quality life and that is a bone marrow transplant! Besides a bone marrow transplant the only other treatment would be enzyme therapy which does not treat the brain like the transplant would. From looking at the cost of the transplant it alone will cost from 300,000 to 650,000 dollars. So that is why my wife and I are asking for any support in any way to allow for us to get to Minnesota and get the transplant treatment started ASAP! The best chance for minimal brain damage would be to get this transplant completed by his second birthday. Trust me any help possible will be much appreciate not only from us but Jackson himself! Please help us to help keep Jackson's beautiful smile and life continuing to grow! Please keep our son in your prays as well!
http://mpssociety.org/mps-diseases/
https://childrens.mhealth.org/
since there are many mutations of this MPS disease. That would not be good enough for my son because with this disorder time is extremly crucial if we want him to live and have a chance at a decent quality of life. So, I decided that day I would put this on my back as a dad and not stop until we got the quickest and best help in the nation. On my way home on June 30th I stopped by the Doctor who found this disorder in my son and was able to speak with him for over 20 minutes in his office. During that time he explained that most likely Jackson had a severe case of MPS 1 "Hurler's syndrome"given all the evidence found. Again a very crushing blow to my family. This disorder is so rare only 1 and 100,000 births are affected. Since that talk with our doctor I have been on a non-stop prusiut to find my son the best help. I believe I have found that help in the form of University of Minnesota Masonic Children's Hospital. There is a researcher by the name of Paul Orchard who is Globally
recognized for his research in Metabolic Disorder's. I have been able to send him many of email, test results, talk to him/team and give them information about my son. Which we found out Friday the 1st @ 6:17 pm the following day that our insurance was accepted for the consultation with Paul Orchard starting July 11th. My son will be evaluated from head to toe by groups of specialist to see if his body is healthly enough to receive the only treatment avaliable to save his life, as well as giving him a decent chance at a quality life and that is a bone marrow transplant! Besides a bone marrow transplant the only other treatment would be enzyme therapy which does not treat the brain like the transplant would. From looking at the cost of the transplant it alone will cost from 300,000 to 650,000 dollars. So that is why my wife and I are asking for any support in any way to allow for us to get to Minnesota and get the transplant treatment started ASAP! The best chance for minimal brain damage would be to get this transplant completed by his second birthday. Trust me any help possible will be much appreciate not only from us but Jackson himself! Please help us to help keep Jackson's beautiful smile and life continuing to grow! Please keep our son in your prays as well!
http://mpssociety.org/mps-diseases/
https://childrens.mhealth.org/