Hope For Hunter: August 2009

Hunter Thomas Reeve was born on March 12, 2009 at 2:38 in the morning at St. Thomas Elgin General Hospital. Hunter weighed 6 pounds and was four weeks early but appeared to be a healthy baby boy.Although Hunter was eating well he was steadily losing weight. Three days after his birth Hunter was released from the hospital and made the trip home. Due to the weight loss Hunter was brought back to the St. Thomas hospital and after a series of tests it was found that Hunter was severely dehydrated. An IV line was started in the top of Hunter’s head because he was too dehydrated for the nurses to find veins anywhere else in his body.Hunter was rushed by ambulance to the Children’s Hospital in London, where he stayed on the IV while doctors and nurses diligently tried to determine what was causing the dehydration. By this time Hunter was down to almost four pounds and struggling to stay alive. Hunter fought hard (even managing to rip out the lines that the nurses kept putting in) and was stabilized thanks to the staff in the Pediatric Critical Care Unit. Without their care Hunter would not have lived through the night.After exhausting all of the non invasive tests, doctors from many specialty units were brought in to try and find out what was causing Hunter’s illness. Dr. Bax of the Pediatric Gastroenterology team was brought in, and in Hunter’s first week of life, he had his first surgery. A sample of Hunter’s small intestine was obtained through a biopsy and sent off for analysis. This is a rare procedure to have done on a baby and is not part of routine testing. Miraculously enough, this procedure determined the cause of Hunter’s decline: his small intestine was not absorbing any nutrients from his food. In fact, Hunter was outputting more than he was taking in.Hunter was diagnosed with an extremely rare and potentially life threatening disease of his intestines called Microvillus Inclusion Disease (MID). This disease prevents Hunter from absorbing any nutrients through his small intestine making him completely dependent on Total Parenteral Nutrition (TPN). TPN is very hard on Hunter’s liver but the only other option is a small intestine transplant.At first it seemed like a very grim prognosis as the complications with transplant are many. But there is hope: an experimental treatment called Omegaven. Omegaven couples Omega 3 fatty acids with TPN which greatly reduces the risk of liver damage and may assist in its repair. Unfortunately, Omegaven is not currently covered by the Ontario Health Insurance Plan (OHIP) or independent insurance companies.This disease only affects one in five million people. Hunter is the twelfth known person suffering from this disorder in North America right now. Currently there is no cure for Microvillus Inclusion Disease. Hunter needs constant medical care and the cost can be overwhelming to a family. There is very little coverage for in home support for families battling MID; as this disease is rare it is not typically covered by OHIP. Although Hunter’s Omegaven is currently being paid for it is unknown how long it will remain covered and what challenges this little boy will face in the future. Because MID is such a rare disease more research is needed to find other treatment options that are not as detrimental to the health of those affected. Hopefully someday this research will lead to a cure. Hunter needs your help to stay home. With your support we hope to make this dream a reality. Please help – because every baby deserves to grow up.

Friday, August 21, 2009

A Milestone Moment

After 123 days on Omegaven....Hunter's billi levels have returned to normal!!! His dietician says his liver is still not completely "happy" since his two other liver enzyme levels are still elevated...which is common...but what a day to celebrate!

His hemoglobin has gone up on its own from 91 to 97...fantastic!!!! It seems the iron supplement in his TPN has done its job. So nice to not have to worry about him having yet another blood infusion due to his hemoglobin levels..

Hunter is doing great...he is so active now and is starting to grab at everything!!! Including his broviac if he doesn't have a shirt on....I assume this is the mild side of what is to come when he starts crawling...walking...etc...etc....

Thursday, August 20, 2009

Newspaper Article...

Hi everyone - Erin here. I'm sure by now a lot of you have seen the article that was in the London Free Press last week. I want to thank the paper for helping us get the word out about MID and Hunter's story. It's been brought to our attention that there have been some letters to the editor urging people to write to their MPs to say that Hunter's Omegaven should be covered. The original article is accurate in saying that OHIP does not cover Omegaven and we would still urge people to petition the government for this coverage. Hunter is currently getting his Omegaven covered by ODB (as posted in the blog written in May when coverage commenced) but there are special circumstances: Omegaven is only covered when it is mixed with a protein (such as TPN). Currently there is only one pharmaceutical company in Ontario that does this. It is unknown how long this coverage will last and unfortunately there are still a lot of families out there that are not getting Omegaven covered. Although Hunter is currently getting the Omegaven there are still numerous expenses that this family is facing. Hunter needs constant care and the cost of in home support is high and is not covered. No one knows what challenges this little boy will face in the future and we hope to continue to raise support and awareness for this family and this disease. Thanks to all those out there that have supported this cause.

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