Stem cell transplant expected to help baby with
immune disorder
Updated: June 5, 2008 04:42 PM EST
Anne Marie Tiernon/Eyewitness News
Indianapolis - A local family has high hopes that their little boy who is
now living a life in a sterile bubble, will soon burst out - and head
home.
"He's been here for months and months and months," said Riley Stem
Cell Transplant Director Dr. Paul Haut.
The world is a pretty small place right now for little Sebastian.
"This is where we are going to stay until he is all better," said
Sebastian's mother, Karin Kunze Guarneros.
This Riley isolation room is this 12-month-old's park and playground.
His mother tries to perk it up with wrapping paper.
"Everything just to make it our little apartment so that way when he
wakes up he sees color. I see color and it just feels homey," she said.
Homey, but sterile - a safer place for a little boy whose immune
system doesn't work.
"This is the classic SCIDS patient - Severe Combined Immune Deficiency
- like the boy in the bubble. And that really is Sebastian," said Dr.
Haut.
The diagnosis was devastating, but not defeating for the family.
"Why not my boy? Why should someone else have it. We are no
different from anyone else so to ask why me is to put it on other
people. Oh, it should be them, it shouldn't be them. I suppose it
shouldn't be us, but it is and here we are and you just do it. You go
through it and you work it out," said Karin.
From birth the couple's second son seemed normal, but when faced
with infections like RSV, and pnuemonia, Sebastian just didn't get
better.
"When they said, 'It's SCIDS' we know that we are fighting a huge
monster in this case. Invisible practically, but you can focus and work
hard to overcome that as well," said Sebastian's father, Enrique
Guarneros.
It means constant handwashing and constant scrutiny.
"I always do my jewelry, anything that he can touch," said Karin.
A transplant from cord blood-stem cells from a donor can fix the
problem.
"Those are able to recreate and grow a new bone marrow for him to
which will produce a new immune system over time," said Dr. Haut.
The procedure was just ten days ago. The most critical period is the
first 100 days - which must remain infection free.
"This might sound weird I don't want to say this is the perfect baby for
going through this because that sounds odd. If any baby can do it, he
can do it," said Karin.
A homecoming is planned for Sebastian.
"I am not a doctor but I believe we'll go home and I believe he'll do
well and I have nothing but high hopes," said Karin.
The family's home needs new flooring, a cleaned circulation system,
and a new room for Sebastian. You can help at a fundraiser tonight at
Traders Mill Grill on West 86th from six to ten.
You can learn more about Sebastian on the family's website.
immune disorder
Updated: June 5, 2008 04:42 PM EST
Anne Marie Tiernon/Eyewitness News
Indianapolis - A local family has high hopes that their little boy who is
now living a life in a sterile bubble, will soon burst out - and head
home.
"He's been here for months and months and months," said Riley Stem
Cell Transplant Director Dr. Paul Haut.
The world is a pretty small place right now for little Sebastian.
"This is where we are going to stay until he is all better," said
Sebastian's mother, Karin Kunze Guarneros.
This Riley isolation room is this 12-month-old's park and playground.
His mother tries to perk it up with wrapping paper.
"Everything just to make it our little apartment so that way when he
wakes up he sees color. I see color and it just feels homey," she said.
Homey, but sterile - a safer place for a little boy whose immune
system doesn't work.
"This is the classic SCIDS patient - Severe Combined Immune Deficiency
- like the boy in the bubble. And that really is Sebastian," said Dr.
Haut.
The diagnosis was devastating, but not defeating for the family.
"Why not my boy? Why should someone else have it. We are no
different from anyone else so to ask why me is to put it on other
people. Oh, it should be them, it shouldn't be them. I suppose it
shouldn't be us, but it is and here we are and you just do it. You go
through it and you work it out," said Karin.
From birth the couple's second son seemed normal, but when faced
with infections like RSV, and pnuemonia, Sebastian just didn't get
better.
"When they said, 'It's SCIDS' we know that we are fighting a huge
monster in this case. Invisible practically, but you can focus and work
hard to overcome that as well," said Sebastian's father, Enrique
Guarneros.
It means constant handwashing and constant scrutiny.
"I always do my jewelry, anything that he can touch," said Karin.
A transplant from cord blood-stem cells from a donor can fix the
problem.
"Those are able to recreate and grow a new bone marrow for him to
which will produce a new immune system over time," said Dr. Haut.
The procedure was just ten days ago. The most critical period is the
first 100 days - which must remain infection free.
"This might sound weird I don't want to say this is the perfect baby for
going through this because that sounds odd. If any baby can do it, he
can do it," said Karin.
A homecoming is planned for Sebastian.
"I am not a doctor but I believe we'll go home and I believe he'll do
well and I have nothing but high hopes," said Karin.
The family's home needs new flooring, a cleaned circulation system,
and a new room for Sebastian. You can help at a fundraiser tonight at
Traders Mill Grill on West 86th from six to ten.
You can learn more about Sebastian on the family's website.
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www.lovebubbleboy.com
| June 11, 2008 |
