How medical research has transformed Stella’s life

How medical research has transformed Stella’s life


(music) – That shock of this can’t be true. Without a bone marrow transplant, and that would be our only hope, kids seem to pass away. Most of them between 10
and 20 years of life. (music) Through pregnancy, everything was normal, there was no indications that anything was out of the ordinary, and when she was six weeks old, her skin started just to form
baby blisters, baby acne, it just got worse and worse, and we went for all kind of therapies. We went for light therapy, Methotrexate and just about every drug and trial that we could possibly think of, we’ve tried that all. And it got so bad that she was wrapped up in wet dressings three times a day, we had to do bleach baths
and all the steroid creams, it was really, really hard. So, with all the skin infections, we were probably in hospital one week out of every month at least.
– Yeah, or twice a month. – Then she was admitted
for intensive treatment and was also just hard on the family and it was only when the
immunologist said to us, “Maybe we should do more testing “to see if there’s anything from there.” They recommended to get blood
sent to The Garvan Institute. So finding a diagnosis
after probably a year of trying all kinds of different things was really such a breakthrough. – There’s nothing that we
could have done to prevent it. It was purely a genetic thing, but it is so, so rare that it
could have only been picked up by the Garvan Institute. – So she now actually has a
wonderful quality of life. She’s able to go to a preschool, she can play, she can have
a swim in a swimming pool. – Completely very content on her own, happy to play or run around
and play with the other kids especially now where she’s
starting to interact more it’s kind of great that she, you know, has a best friend at school
that she tells us about. We can just let her go
and be a toddler really. – That’s given Stella life. If it wasn’t for Garvan we would have never had the diagnosis, we would have never gone
down this treatment path and she would still be sitting
in a corner scratching. I see them as a life saver in our case. (music)

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