H.O.P.E. started as the vision of Ricky's parents. Our desire to help him and all the other brain injured children like him is the driving force behind it.
Ricky was born 2 1/2 months
prematurely, weighing 3 pounds, 11 ounces. At three days old, he had a head ultrasound done(routine for all premature babies). We were told that it was
"suspicious" for PVL (periventricular leukomalacia) and that more often than
not PVL leads to Cerebral Palsy. At ten months, Ricky's diagnosis of
Cerebral Palsy was confirmed by MRI.
My first question was, "What do we do
to help Ricky?" I was told to just wait and see what would happen. That was
certainly the most ridiculous statement
that has ever been made to me! I had just been told my child was brain injured - what parent in their right mind would sit back and wait to see what might
happen? Obviously,to be able to say that, these medical professionals were parents of healthy
children, or no children at all.
After much
insistence on the part of my husband and myself, Ricky was started on a
program of traditional therapy that included physical, occupational and
speech therapy. This was all well and good, but something just didn't add
up - PT and OT can certainly help with exercising the extremities, but
Ricky's problem wasn't in his arms and legs - his problem was in his damaged
brain. When I stated my question, "How can these therapies help Ricky when
they are only treating the symptoms, not the cause, of his brain injury?",
you would have thought I was speaking a foreign language to these doctors. I
was told, in no uncertain terms, that "we" were doing the best we could for
Ricky. These therapies have been in use for years and they were the best
hope we could have for our child to develop to his full potential. It was at that point that we realized we would have to find a way to help Ricky.
After countless hours of research, I found a Symposium to attend that I felt
would be very informative. I made the arrangements to attend the 1st Annual
Symposium on Hyperbaric Oxygen and the Cerebral Palsied Child. This was the
best thing I could have done. Thanks to Dr. Neubauer and the other speakers
at the Symposium, I was convinced that ,as a parent of a brain injured child,
it was my responsibility to start an organization that would help educate and
financially support others like myself. Hyperbaric Oxygen (HBO) can truly
work "miracles". I have seen the outcomes of HBO on video, but more
importantly, in person. Every child should have the opportunity to receive
these treatments, should his family choose to do so.
Due to FDA
regulations, however, HBO is not yet approved in the United States. Because of this the costs involved are extremely high.
It is out of our love for Ricky, and other brain injured children, that H.O.P.E. was started. Every parent wants only
the best for their child. The only difference being that parents of brain injured children have to work harder to accomplish this.
HBO is an accepted method of treatment for many conditions, however, brain
injury is not one of them. There have been case studies and some scientific
research on this topic and the preliminary results are extremely positive.
It is now our responsibility to find a way to convince the NIH and FDA to
undertake the task of more studies - case studies; and eventually approve HBO
as a treatment for our children.