Must avoid a transplant at all cost
Donation protected
Miley's Story begins at birth.
When her Bio-Mom didn't have the ability to care for Miley, so she left her at Rapid City Regional Hospital where she was lucky enough to be put under the outstanding care of Dr. Benn. Having been born prematurly, they expected some weight loss, but on day 3, she was still losing weight at an alarming rate. Everyone was puzzled as to the cause. But considering her continual weight loss, Dr.Benn immediately put Miley in NICU (Neonatal Intensive Care Unit).
She remained there for the next three months. And during these first 3 months of her life, she had to undergo lots of painful procedures and discomfort. And during all these painful procedures and tests, the only one Miley had to hold her, and console her., except the nurses. But the nurses often got very busy, she was often sedated to keep her from getting too upset.
Finally on February 12, 2012 Miley was transpprted by ambulance to Omaha Nebraska where she underwent an invasive biopsy of her small intestine. That is when they confirmed that Miley suffered from a very rare intestinal disease called Microvillus Inclusion Disease (no stomach lining).
She cannot eat or drink anything by mouth, therefore intravenous TPN and lipids are the only way for her to get the necessary nourishment to sustain her life. ... or SO WE THOUGHT! Then Becky and Jenny found the story about another child (Sammy) with a similar decease. When Sammy's liver began to fail from the lipids, his parents started an exhaustive search they found OMEGAVEN, a possible alternative to lipids, but the FDA has it classified it as experimental drug.
After watching a video about Sammy's journey with OMEGAVEN. we were sure that OMEGAVEN could help Miley's situation with her liver.
Lipids are a necessary for us to sustain life. So, even though we knew the lipids were like a ticking time bomb, but there wasn't much choice... Enter OMEGAVEN, a possible replacement for the liver destroying lipids.
OMEGAVEN is extracted from fish and contains Omega3 fatty acids, which does pretty much the same thing as lipids, without having a negative impact on her liver. The hope is that OMEGAVEN would give Miley's liver a chance the repair itself, at least enough to take a transplant off the table. The reason we are so adamant that Miley avoid a transplant isn't the liver transplant. This type of transplant has become fairly routine. It's that the surgeons would also transplant her small intestine during the procedure. We haven't found any encouraging statistics about an intestine transplant, or even just surviving the surgery. So we are choosing to not have this precious little girls life be cut unnessarrily short.
So if it's within your means to donate to Miley, your donation will go to a very worthy cause.
Thank You!
When her Bio-Mom didn't have the ability to care for Miley, so she left her at Rapid City Regional Hospital where she was lucky enough to be put under the outstanding care of Dr. Benn. Having been born prematurly, they expected some weight loss, but on day 3, she was still losing weight at an alarming rate. Everyone was puzzled as to the cause. But considering her continual weight loss, Dr.Benn immediately put Miley in NICU (Neonatal Intensive Care Unit).
She remained there for the next three months. And during these first 3 months of her life, she had to undergo lots of painful procedures and discomfort. And during all these painful procedures and tests, the only one Miley had to hold her, and console her., except the nurses. But the nurses often got very busy, she was often sedated to keep her from getting too upset.
Finally on February 12, 2012 Miley was transpprted by ambulance to Omaha Nebraska where she underwent an invasive biopsy of her small intestine. That is when they confirmed that Miley suffered from a very rare intestinal disease called Microvillus Inclusion Disease (no stomach lining).
She cannot eat or drink anything by mouth, therefore intravenous TPN and lipids are the only way for her to get the necessary nourishment to sustain her life. ... or SO WE THOUGHT! Then Becky and Jenny found the story about another child (Sammy) with a similar decease. When Sammy's liver began to fail from the lipids, his parents started an exhaustive search they found OMEGAVEN, a possible alternative to lipids, but the FDA has it classified it as experimental drug.
After watching a video about Sammy's journey with OMEGAVEN. we were sure that OMEGAVEN could help Miley's situation with her liver.
Lipids are a necessary for us to sustain life. So, even though we knew the lipids were like a ticking time bomb, but there wasn't much choice... Enter OMEGAVEN, a possible replacement for the liver destroying lipids.
OMEGAVEN is extracted from fish and contains Omega3 fatty acids, which does pretty much the same thing as lipids, without having a negative impact on her liver. The hope is that OMEGAVEN would give Miley's liver a chance the repair itself, at least enough to take a transplant off the table. The reason we are so adamant that Miley avoid a transplant isn't the liver transplant. This type of transplant has become fairly routine. It's that the surgeons would also transplant her small intestine during the procedure. We haven't found any encouraging statistics about an intestine transplant, or even just surviving the surgery. So we are choosing to not have this precious little girls life be cut unnessarrily short.
So if it's within your means to donate to Miley, your donation will go to a very worthy cause.
Thank You!
Organizer
Matt Bruer
Organizer
Lead, SD