Bo was born on 6/3/07 with the rare congenital disorder currently known as Microvillous (Microvillus) Inclusion Disease. It took 2 hospitals and 5 weeks to diagnose. He became the 61st baby in the US to receive Omegaven. His nutrition is 100% TPN/Omegaven. We believe there will be a cure for this in our lifetime, and that a transplant is NOT the best option for this disease. This is our story.
Tuesday, March 16, 2010
Comment on Japanese Regenerative Medicine: Intestines
While I see hope that medical advances may provide, if not a cure, a partial reprieve from some of Bo's medical complications from his condition, I felt a need to comment on the recent publication that seems to be making the rounds. This technology is great, and may prove to be a cure for those with gross anatomical short gut: kids whose intestines were removed due to NEC, or volvus, or even pseudo obstruction. However, for those of us whose kids are on TPN due to genetics (MID, Hirschsprung's, tufting enteropathy, etc.) this technology's usefulness only comes into play when a second step can be successfully accomplished: gene therapy. I for one don't think Bo needs more centimeters of the same non-absorbing surface that he currently has. And really, if that second step is possible, you might even hope you could bypass that step of needing additionally created artificial intestine and just apply the gene therapy directly (like the gene therapy that has returned some vision to blind patients whose conditions were genetically caused http://www.reuters.com/article/idUSTRE57B5PN20090812).
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