Because of the lack of information and
documented cases, families are being misinformed
concerning prognosis, quality of life and just
what to expect for our children. We are trying to
pioneer projects in hopes to make a better world
for our children, their families and those to
come.
Goals:
Education: To reach other families who need
assistance. We have established an online group
of concerned and effected families, and a website
that will be up and running on or about Nov 30th.
Establish a clinic to include medical studies,
psychological studies, educational/accurate
informational documentation, and a family support
system.
As you know dwarfism is wide spread all over the
world and there are many avenues in which the
common types of dwarfs may go, to find all of the
above mentioned items. But being Primordial they
don't have these avenues. Our children are a
totally different group of individuals (because
its so rare) and this rarity poses many problems,
what was rare, is now becoming more and more
prevalent:
Problems:
Who do they relate to?
Where do we go to get information (any)?
What are their life expectancy?
What programs/schooling are available for our
children?
and the list goes on, but these are basic
questions that we hope to answer no matter how
small of a group we are. Now, the number is
rapidly growing.
Funding to support our mission
What funding is there for our children, medical,
educational?
Most of the families we have been in contact with
have the same story. Doctors truly don't know or
have the data to fall back on, about our kids,
and most of them are VERY intrigued as to why
this has occurred. They want to find out more,
but without the help of (funding/organizing) we
can't get any of this done. So, we are still
stuck in this loop of not knowing. In the past
year there has been more and more families all
over the world (due to the internet) search for
others like our children. All of us are willing
to do what we can to get this done. But your help
and assistance is requested and required.
I have been told that our group is small and that
the dwarfism that affects our children is so rare
that its not a priority. We must find out the why
this is occurring to our children. We are left
without answers to our questions.
Our mission statement is:
To improve the quality of daily living for our
children. To provide both a professional and
personal support system for our families and to
always remember this is not about or because of
our children but for our children.
What I am asking of you, is that we need your
help. First to let other families know that we
are out here and fighting for our children and
the knowledge needed for the families peace of
mind and the ability to gain avenues for research
and studies for our children; as well as funding.
We need doctors willing to volunteer their time
and abilities to correctly diagnosis our children.
I know that this is asking a lot, but from being
in the shoes of a parent whose child was
diagnosed with primordial dwarfism, its hard to
come from a doctor who has no clue what is going
on.
But he tells you that your child is going to die,
and to prepare for a funeral. But in reality,
seeing your child grow and mature (with physical
and some mental disabilities) and the
professional not able to give proper treatment (doctors
not knowing how to correct some of the physical
disabilities and others who do know how to
correct some of these problems are not able to
see all our children whether its because of
financial heart ship, we're all from different
parts of this country, sickness, or just cant get
the insurance's to see that our children need
specialist) as well as knowledge regarding what
is to come in the future.
Please, please consider doing what ever you can
to help us. If you have any additional questions
you may contact me at 502-239-1595.
Thank you.
Annette Axe
P.S. You can view pictures of our children at:
http://www.geocities.com/primordial_dwarfism/Kidsphotos
