MDF Magazine Issue 64 April 2021

PEOPLE
reach a certain age. But I believe that this is something
you can say for any individual, because no one has
the certainty of what's going to happen tomorrow.
Abandoning every hope, convinced that there is no
future for DMD patients, would be like stopping to drink
and eat, because eventually life is going to end and
nothing can change that. Whereas life must be planned,
dreams must be pursued, and human relations must be
cherished, no matter what. Because otherwise, at the
age of twenty, you find yourself with no passions, no
interests, no love: and so, you don't have a present.
I owe my parents the fact that I've never felt different:
so, as they did, allow your children to take risks, to fail
sometimes, to savour life in every aspect good or bad.
You'll see the results, and your kids will be grateful. Just
remember that first we must realize that we're normal
and we can have a full life, than [sic] we can show it to
the world. You cannot live your life hoping in a miracle,
in a prodigious remedy that is going to fix everything.
In this last few years, research has taken a giant leap
forward, trials on man has started, showing that maybe
a cure is not so far away. But what would happen if
you spent your whole life just waiting for a cure that will
finally allow you to live what society calls ‘a normal life’,
it [sic] the treatment doesn't reach you in good time?
You would have lost a life just waiting, not living. You
must become aware of the fact that you can live a full,
happy, satisfactory and meaningful life, that maybe our
disease isn't all bad after all.
We must try and embrace our condition, and then we
can start to see upsides. Believe me, they are just as
many as the downsides. As my friend Pat Moeschen
likes to say ‘Membership has its privileges’. And so,
we have reserved parking, we don't have to queue at
amusement parks, movie tickets are less expensive.
In my country, people think twice before insulting you
in your face. And if they do so, we can ‘wheel’ them
down! And, in a relationship, a disabled person has
the absolute certainty that the person with whom he's
involved, really loves him for what he is.
Once we have learned that our disability is not an
obstacle in the pursuit of happiness, if the cure were
to arrive, it would still be great. But if this weren't to
happen, it would not be a problem. Because we had
understood that we are, and always be, the makers of
our future.
Thank you."
Article available at: https://www.duchenneuk.org/lucabuccella
WCMX (wheelchairs can’t
make an X-split?)
By Rothea Louw
BMX is a well-known sport and
phenomenon.
Every street in every town has at
least one prospective Mat Hoffman
riding and jumping up and down
over the pavements. It was only
of late that I learnt that BMX is the
abbreviation of bicycle motocross.
It is not just a name like Giant or
Trek bicycles.
Aaron “Wheelz” Fotheringham is the
name of one of these prospective
riders. The difference is that he
does not ride a bicycle. He flies by
wheelchair and competes against
BMX riders on the international
stage.
Aaron comes from Las Vegas and
lives in the United States. He has
spina bifida but no fear. He started
using a wheelchair at the age of
eight (8) after he lost the ability to
use his legs.
It was during this time that his
brother, who was an avid skater,
motivated Aaron to get on his chair
and try to skate along. With his
wheelchair and his mom cheering
him on, he changed the concept
of wheelchairs forever. On open
stages he did back flips and front
flips. He fell more on landings than
he succeeded, but he persevered.
He calls his sport and the magic that
he does “wheelchair motocross”, or
WCMX.
A famous saying of Aaron is:
“I am on a wheelchair, not in a
wheelchair.” Another is from an
interview, when he commented: “It
is a wheelchair, not a prison.”
Although that attitude is easier
to state than to put into practice,
it is still an inspiration for many
wheelchair users.
Click on the following link to
take a flip and a fall with Aaron:
https://www.youtube.com/
watch?v=UQuBzShOFew
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