I always say this is a story of seven
years chasing after money, chasing after
scientists, huge use research all in one
golden injection.
He's my fourth child so I know how kids
should grow up. So about the age of two, I
really found that things weren't moving
along as I was hoping to and therefore I
started checking and making appointments
with doctors, and at first they told me
that he just had a slight delay, but I
didn't trust that theory and I started
looking further and further, and after
five years they finally found what he
had, which is Giant Axonal Neuropathy,
and it is very rare genetic disorder.
When he was seven, he still could walk.
He had like a big stroller, special stroller.
By the age of eight he started using a
wheelchair, and then he did his own
transfers from one chair to the other,
but it then he started falling down and
then I said don't do this anymore because
once he broke his leg by just twisting
his foot.
We saw Santa about three or four times.
Big ones, small ones. We had to live here
because of the infection he had and then
somebody came to us and she brought such
a bag that high full of presents.
She came and she brought it to him and then
Taylor from the reception, he said, whose
name is on it. Well it's Gillians name
and there was another bag for me so we
went to the hotel with two such bags.
