JOHN CONNERTY: With the right support, with
the right network behind them, they can reach their full potential in life, and that’s
so important, especially when you live in a world that’s not made for you.
COMM: For the last nine years Sue and John
Connerty have been organising an annual convention for families affected by primordial dwarfism.
SUE CONNERTY: It’s a biggest gathering of
individuals with primordial dwarfism throughout the whole world.
JOHN CONNERTY: The events we put on to throughout
the convention has a mixture of opportunities to allow families to connect, to bond. The
families at the end of the week will feel as if they’re not alone, they’re not different
from anyone else.
COMM: Primordial Dwarfism is incredibly rare.
It’s estimated, they’re only around 200 individuals with the condition worldwide.
And this year’s weeklong convention has brought together more than 30 families!
SUE CONNERTY: Come from as far as Australia, Colombia, Switzerland, Algeria.
JOHN CONNERTY: Russia, France, Portugal, Germany, Croatia.
SUE CONNERTY: Netherlands.
JOHN CONNERTY: And the UK.
SUE CONNERTY: Yeah, so from vast areas of the world.
COMM: Joanne Webster and her seven-year-old
daughter, Avery, have travelled all the way from Canada.
JOANNE WEBSTER: We’ve been coming since
she was one. And we come back every so that she can meet her friends and we get to hang
out with the adults again and talk to people who understand what it’s like. We haven’t
missed one yet!
COMM: After their son Alex was diagnosed with
Primordial Dwarfism, Sue and John founded their founded their charity, Walking With
Giants, to help other affected families.
SUE: When Alex was diagnosed, it was very
lonely, you search the Internet, you trawl everything. First of all it’s “Why me?
Why is this happened to us, what have we done?” You got no one to talk to and to ask questions.
JOHN CONNERTY: When we first met families,
we were walking into the unknown, we were scared. And within several hours all of our
concerns and fears were taken away from us. But it is an experience for any new family
to come along and, come on…come along…and feel as if they are wanted, to feel as if
they are not weird, but normal.
ETHAN KING: This is our second year. Last
year when we came she wasn’t walking. Seeing all the other little kids running around just
gave us hope that she can start walking, and then she did!
JOHN CONNERTY: For the lot of the families
this is the first time that they’ve met a similar family. There is nothing better
for a dad to be able to look in to another dad’s eyes and ask him a question that he’s
got answers to. And a great burden is taken off their shoulders, for the mum to be able
to give another mum a hug, and a cuddle to say “It is tough, but you’ll get there.”
COMM: Pauline and her fifteen-year-old son,
Leo, have flown from Australia for the second year running.
PAULINE: I remember the first time Leo met
with all these people; it was like they were long lost cousins, you know, they had so much
in common, and it was essential in a lot of ways. We took back all of the information
to our doctors of what the other children had encountered, and we get a wealth of information
talking to other parents, things that you just can’t talk to normal parents about,
because we have so much in common and the problems that you have with a special unique child.
LEO: I really am Superman! I protect the people...
...of Australia.
COMM: It’s not just parents who share information,
the charity also has a specialist medical team available for consultation.
JOHN CONNERTY: Most importantly, during the
week we have doctors on our medical advisory board performing individual assessments. Which
allows those parents and their children to bring back information to their doctors, and
that allows themselves a blueprint of care for the next twelve months, which is important.
COMM: One child hoping for an official diagnosis
is Emma from Holland.
ROBERT: Emma is almost five years old.
INTERVIEWER: And what type of Primordial Dwarfism does she have?
ROBERT VAN DER LINDEN: Pretty unknown, they don’t know!
INTERVIEWER: They don’t know so you’ll be seeing a doctor tomorrow?
ROBERT VAN DER LINDEN: Yeah, for the first time.
INTERVIEWER: For the first time, what does that mean to you?
ROBERTVAN DER LINDEN: It’s very exciting
and a little bit afraid of the unknown.
JOHN CONNERTY: Prior to the Walking With Giants
Foundation, a lot of parents and also a lot of doctors had to rely on possibly one research
paper that was done 25 years ago. Since then, and by bringing these families together with
our medical advisors and researchers, you could say that paper is being rewritten. And
it is being replaced by a lot of new research, understanding, a lot of diagnostic testing
being implemented, all because children have been coming together, and the medical assessments,
which has broadened these doctors’ knowledge.
COMM: This year’s convention has been an
unprecedented success, which Sue and John hope to build on.
SUE CONNERTY: It was mind-blowing for me to
think that we had over 30 families!
JOHN CONNERTY: For me as a father, I’m so
proud, I’m sorry. That my son is creating a life… sorry, I’m sorry, I can’t. For
me, I’m so proud that my son is creating a legacy for the next generation of families
so that they won’t have to go through what we had gone through. Lack of knowledge, lack
of understanding, the stigma. Hopefully in the next 10 years, the next generation of
families will be able to walk with their heads tall.