I decided to create 'Saving Jules' in the hopes that other parents will chance upon my blog and discover others on the same journey they are, with a diagnosis of Idiopathic Pulmonary Arterial Hypertension. Yes, we face every day with the knowledge that this may be Julian's last, but what a journey we are on with him!
Thursday, 21 February 2013
These 3 Charities have our hearts!
enough to help the feeble up, but to support them after. -William Shakespeare
During our journey with Julian’s condition, our family has been so very
fortunate to have been the recipient of much-needed help from, and through,
certain charities that have helped us distance ourselves from the never ending
worries that go hand-in-hand when your child is sick.
Thank you from The Summers Family to Precious Hearts, HeartKids Qld and
the Make-A-Wish Foundation.You have
each brought happiness, smiles and laughter to a family that sometimes has
troubling finding reasons to do so.
Each one of these charities, in their own way, has made a huge difference in
our family’s life.Supporting us
emotionally, helping to give us memories beyond our imagination, and giving
some distraction and a boost in an otherwise emotionally exhausting time.And the people we have been lucky enough to
meet on our journey have changed our lives in too many ways to count.Some have given us strength and some have
shown us the different paths available for us to choose.
Julian was the
recipient of a Precious Hearts Care Package when he had his surgery in August
2011.Believe me when I say that this care
package made his stay in hospital easier on us both!
Precious Hearts is a charity that was formed to provide children
recovering from heart surgery with care packages.After open heart surgery, children are very
restricted, their ability to move is quite limited and their hospitilisation
can last as little as a week or as long as several months.
Precious Hearts provides these children with care packages to lift their
spirits and help them pass the long, inactive days that follow.Each care package is age appropriate and
filled with items such as colouring and activity books, pencils, textas,
crayons, story books, puzzles, craft projects . . . the list goes on and
on.They cater for children from birth
to 16 years of age.
The Care Package Program runs at The Children’s Hospital Westmead, where
there are close to 1000 heart procedures performed each year.These care packages are kept on the cardiac
ward and given to children by the nursing staff when they return from the
intensive care unit after surgery.Precious Hearts also send many care packages each week to children in
hospitals all over Australia, so if your child, or a child you know, is having
heart surgery, please contact Precious Hearts and let them know!
An astonishing amount of hours go into running a charity, and Precious
Hearts is run completely by volunteers, something they are very proud of!It is run by people who have all been
personally affected by Congenital Heart Disease and are driven by their wish to
help others in the same situation.No
one at Precious Hearts is paid for the services.They work hard to raise funds all year round,
and donations of items to go into their care packages are always needed and
appreciated! Precious Hearts would love
to receive anything that would keep a child occupied in hospital.
I first became
aware of HeartKids Qld when a Statewide email was sent out through Qld Police,
where I was working at the time, just a few months before Julian was
had sent out an email asking people to support HeartKids Qld by purchasing one
of their financial year calendars.About
a month after Julian was diagnosed, when it had all kicked in and settled down
a bit, I remembered the email and contacted Michael, asking if he could pass on
any contact information to me.He
emailed me back (I really wish I had printed it out and kept it now that I’m
not working for Qld Police anymore!) and that night, his beautiful wife,
Charmaine L called us at home, lending a shoulder to cry on, an
ear to bend and some extremely helpful advice for getting through the diagnosis
and looking past it to the future.Thank
you so much, Michael and Charmaine, for your support to complete strangers in
their time of need.I’m sure we haven’t
been the sole recipients of your generosity!Nigel and I later became closely involved with HeartKids QLD, becoming the official photographers of their financial
year calendars, and a very good friend of ours (and father of a HeartKid himself) Steve K, joined us one year in helping us with the creation of the calendar itself. Over a 3 year period we were so fortunate to have met so many wonderful children and their families.Thanks to Paige R, her family, and Darren Pratt
(then President of HKQ, who has sadly passed away), Julian received a laptop
when he was 7 years old to help make sure he settled down a bit and stopped
his persistent efforts to extend himself physically.Wonderful people, and a wonderful support base for parents who have been
hit with this horrible condition.
HeartKids Qld Inc is a not for profit organisation, which has grown from a small
group of parents meeting informally for support (known then as “Heart to Heart”
Cardiac Support Group Inc), to representing and servicing the needs of
HeartKids and their families throughout Queensland and Northern New South
Wales.They strive to raise Awareness,
and provide Advocacy and Support to families.HeartKids collectively pools their resources on a national level to
undertake research in regards to Childhood Heart Disease.All money raised goes towards enhancing the
lives of all Heart Children and their families, through information, and
providing support and understanding.Everyone involved with HeartKids Qld knows what it’s like to be faced
with the distressing news that their child has a heart condition, whether it is
congenital or acquired, and all members work on a voluntary basis.
Everyone copes with this information differently, but it does help to
speak with other people who have been in similar situations and can give both
advice and support when it’s needed.HeartKids Qld believes that parents who are well informed and supported
are better able to cope with the day to day management of their child and their
condition, and they recognisethat the number of questions that need to be asked are not always
medical.On a parent to parent basis,
they try to help find workable solutions to problems, and help parents gain
confidence in their ability to cope.
In mid-2012, HeartKids Qld commenced their “Thank You Angels” Project,
in collaboration with “O’Shea”.The
objective of the project was to develop an awareness campaign for 2013,
incorporating O’Shea’s single ‘Thank You Angels’, which is dedicated in part to
the HeartKids.You may recognise the
advertisement that is currently showing on our televisions now, click here to
see it now:
Receiving his Wish with Nitro at White Water World
Julian had a wish to go to Canada to make a snowman, a snow angel and have a
snow ball fight.Unfortunately, he was
too young to travel overseas, and his IPAH did not allow for long plane flights
either.So, Make-A-Wish Australia sent
our family to Perisher for 8 days of snowman building, snow ball fights, skiing
lessons, love, laughter and fun.
Make-A-Wish Australia grants wishes to children and young people who
have life-threatening medical conditions, and in doing so, enriches their lives
with hope, laughter and joy.Make-A-Wish
Australia is a national charity with over 1,100 volunteers and 57 branches, and
although Make-A-Wish is a worldwide charity, all money raised in Australia goes
towards granting wishes to children living in Australia.Since it began in Australia, they have
granted more than 7,000 wishes; worldwide Make-A-Wish has granted more than
All children who are recipients of a wish have a life-threatening
medical condition, and although this covers a variety of illnesses,
approximately 60% of these children have some form of cancer.Wish types fall into four different
categories; ‘I wish to be’, ‘I wish to go’, ‘I wish to meet’ and ‘I wish to
have’.Most common of these are wishes
for computers, cubby houses and trips to the Gold Coast.
If you want to help sooner, rather than later, Make-A-Wish Australia is
running a fundraising campaign called “Wish Day” on Friday 22nd
March, 2013. Wear
what you wish and raise money to help make wishes come true and make a
difference for seriously ill children.If you would like to get involved in “Wish Day”, follow this link and
have some fun with it!http://www.makeawish.org.au/netcommunity/page.aspx?pid=1844
If you know of anyone who could benefit from any of these three
charities, please let them know what is available to them.