Angelman Today January / February edition 2014 | Page 41
with the enormous responsibility
of caring for their Angel for a
solid week. So, we're also
providing a male and female
caregiving team, who are certified
special needs caregivers and who
have experience with caring for
people with Angelman Syndrome,
for the entire week as a help team
to whomever the parents designate
as their caregiver for the week.
We want it to be a week off for the
Angel too. The team will take the
Angel to the park or the zoo or a
museum, each of the seven days.
An activity for each day will be
chosen in coordination with the
parents and the parents' designated
caregiver ahead of time. Our team
will be there to help in every way
possible. There will be skype and
face time available any point the
parents want to check in. We want
them to feel good about the hands
their Angel is in. We want them to
relax. We want the Angel to have
a great time as well.
We hope to make this a biannual
thing eventually or (my personal
goal) make it a monthly thing. But
this year we'll start with one
family and see how it goes.
Yolanda and I don't want to be
involved in choosing the family,
so we're making it a contest of
sorts through the new publication
Angelman Today. We're asking
those interested in applying to
write a five hundred word (or less)
essay on their Angelman Journey.
We want to hear your story. We're
asking that all applicants have an
Angel over the age of five-yearsold. The first 50 will be accepted.
Then a panel made up of one of
our board members, a
representative from Special
Olympics, a representative
from Best Buddies, a representative
from Make A Wish and Lizzie Sordia,
managing editor of Angelman Today,
will decide on the winning
applicant. The Live In The Vineyard
event takes place twice a year. Once
in April and once in November. We
will coordinate with the winning
family as to which week they'd like to
do. Then ..the fun begins.
There are so many heavy things
Angelman families deal with on a
daily basis. There are so many heavy
things the Angelman community is
trying to collectively achieve for our
children. We know this and we are in
it with you. But sometimes it's
important to get away, drink some
wine and get lost in a song or two.
This is the world Yolanda and I know
and it's something we can offer.
We appreciate Angelman Today for
helping us coordinate the contest. We
believe it's going to be a wonderful
experience for one deserving family.
Our prayer is that in the future we can
make something like this happen for
every Angelman family.
You can enter your essay at:
[email protected]
AD