Raquel Williams - Cerebral Palsy - Global Atrophy, delayed
development, progressive dystonia, diminished cognition, gross motor
delay
‘Raquel got stuck in the birth canal, her heart rate plunged and
she and suffered oxygen deprivation. An emergency caesarean section
was performed; Raquel was delivered and seemed to be healthy and
just like any other baby. But when she was 4-months old I noticed
that something was odd. She could not hold her head up like other
babies and she seemed to be a lot more irritable than other babies;
she was crying a lot.
I
took her to our specialist and eventually we were told that Raquel
had cerebral palsy and that she would also be a quadriplegic. I felt
as if the wind had been knocked out of me! I didn’t know much about
cerebral palsy then but the news that our baby was also a
quadriplegic was also shattering!
It’s like she is trapped inside her own body. Its torment knowing
that she may never walk or talk yet we think she is bright enough to
know her disability – and this is extremely frustrating! We have
another healthy boy and it hurts to think that my little girl is
probably watching her baby brother crawl and toddle around and
wondering why I can’t do that – it was just so unfair!
We
have taken Raquel on several occasions to Melbourne for Hyperbaric
Oxygenation. Due to her CP she has low muscle tone, is unable to
sit, crawl or walk. She can smile and communicate and for the
majority of the time she is happy. Raquel is often frustrated with
being unable to control her body in the way that she wants too as
her cerebral palsy has not affected her mentally, just physically.
She is clever and bright and once we can help her regain control of
her body – the sky is the limit!
Raquel has made many improvements with HBOT combined with many other
forms of therapies to assist her development. However so far the
most improvements have been when Raquel started HBOT. This involves
breathing 100% oxygen inside a pressurized chamber. They put
children into these chambers like divers and it helps activate
dormant brain cells.
Raquel has made remarkable improvements with HBOT; After 185 hours
of HBOT Raquel can now hold her head steady for longer than she was
able to before; she has much more strength and stability throughout
her entire body. She is now more alert, interactive, smiling and has
more purposeful hand movements. Raquel has grown, she now blinks yes
and no; she is smiling more; she has more visual response, greater
muscle control and overall her cognition has improved a lot.
We
are looking towards umbilical derived stem cells and we are fund
raising money so we can go overseas to at least try and see if stem
cells can assist Raquel’s development. To me despite the controversy
the stem cell treatment has provoked, anything that would improve
Raquel’s quality of life is worth it, and if this kind of treatment
wasn’t allowed in Australia, and then I will go to where it could be
performed. You can’t look back when she’s older and feel bad that we
didn’t try everything possible!
But not everyone is enthusiastic as we are. You’re probably going to
waste your money and Raquel’s body may reject the stem cells said
one doctor we spoke to. The treatment is still in its experimental
stages and there is no guarantees it will work’ I often wonder how
the experts would feel if it was their child who was in Raquel’s
condition – Sharon Williams.
