Stem Cell & Gene Therapy for Fatal Bubble Baby Disease

Ronnie was born on March 9th, 2017 We were at Mercy Folsom Hospital. We were very excited. Everything was perfectly normal. Until, we received a call from our pediatrician in Folsom saying that, you know, this SCID which we don’t know what it’s about. He said it’s coming out to be positive so
can you go back to the hospital and give a sample of blood again. So we started doing Google about the SCID. Initially, we wrote it like S-K-I-D and then
we realized it’s actually S-C-I-D. It was very, very threatening. Everything that Wikipedia says, everything
that Google says is kind of very scary about SCID. We know that he didn’t have an immune system, so
went back to the hospital and it came out again to be positive. We are very grateful that we are in the state
of California. Within California, the newborn screening is
here. That saved his life. We came to UCSF as soon as the doctors said
you might have to come as quickly as possible. So we rushed here by two hours and he was
admitted here. We were introduced with the bone marrow transplant. Bone marrow transplant from the very beginning
sounded very kind of scary. We knew that I was going to be the donor and
when my stem cells go into my son it might work very well for him but we were hearing
about the Graft vs. Host situation and a lot of other problems going on. So we started doing the search on gene therapy. As soon as we heard that the stem cells would
be collected out of him, then will be corrected and then given back to him, we were very hopeful. Doctors were very kind enough to introduce
us with one of the other patients from Sacramento and everything was going well. So we signed the consent and now he’s a very,
very healthy baby. He has a perfectly good immune system now. This is the day when we got discharged from
the hospital. This is the day before yesterday I guess when,
when he had his first solid meal. But, yeah, he’s doing very good. And thank you. Thank you for the team here who has, you know, done everything. Thank you.

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