A new heart for Reid

Transcription

A new heart for Reid
SPRING 2015
A new
heart for
Reid
Some people wear their hearts
on their sleeves, but for months,
seven-year-old Reid Skogen wore
his in his backpack.
After a virus attacked his heart and
damaged it beyond recovery, Reid
was listed for a transplant. Instead of
being hospitalized while he waited, he
was able to be at home with his family
thanks to innovative technology known
as the HeartWare Ventricular Assist
Device (HVAD). A pump was surgically
installed in his chest to replace the
function of his failing heart and, with a
thin cable, the pump was attached to a
controller and batteries outside Reid’s
body, which he carried with him at all
times in a backpack.
...more inside
R
eid and his family shared their story during
this year’s Country 105 Caring for Kids
Radiothon. Listeners called in and dropped
by to express their support, shocked that
Reid’s life was dependent on the equipment
he carried in his trusty backpack. Thankfully,
just weeks after Radiothon, Reid received
his heart transplant and is now transitioning
back to a more normal and backpack-free
lifestyle.
keep them alive until they had a heart
transplant,” says Dr. Greenway. “Now, thanks
to advances in technology, kids like Reid
don’t have to be stuck in hospital. He was
able to be home with his family in Calgary
while he waited for a transplant. Reid waited
five months. Some families may wait a year
or longer.”
It’s reassuring to know the Alberta Children’s
Hospital now has HVAD technology of its
“The HVAD played a crucial role in getting own, says Dr. Greenway, because at any
Reid to the point of transplant in a way that given time, the hospital is caring for up to
meant he could spend
four children listed for
“The HVAD played a heart transplant who
time with his family
outside of the hospital,”
crucial role in getting may deteriorate and
says his mom Cindy
become dependent on
Reid to the point
Skogen. “I can’t imagine
it.
what our lives would
of transplant. I can’t
While the HVAD does
have been like during
not provide complete
imagine what our
the wait without it.”
independence for the
lives would have been children and their families
And there is more
great news to share.
– they still require
like during the wait
Thanks to the generous
frequent hospital visits
without it.”
supporters of Radiothon,
and close monitoring
the Alberta Children’s
– it does allow them
- Cindy Skogen, Reid’s mom
Hospital Foundation was
a better quality of life
able to purchase a backup HVAD controller, while they wait. In Reid’s case, the HVAD
a programming monitor and a set of was an important part of his rehabilitation
batteries —
­ equipment that previously had – allowing him to sleep in his own bed
to be borrowed from other facilities to help and get regular exercise by playing with his
kids like Reid.
sister, climbing stairs and walking around.
Alberta Children’s Hospital cardiologist This helped keep Reid healthy. The HVAD
Dr. Steven Greenway says one of the best also gave Reid the freedom to attend
features of the HVAD is its portability, classes at the hospital’s Gordon
allowing children to live at home while Townsend School, go to a Calgary
Flames game and even meet
waiting for a transplant.
NHL star Sidney Crosby. Reid’s
“Before, these children would be in hospital, good health pre-transplant meant he
they’d be connected to a machine about had a rapid recovery post-transplant
the size of your microwave and that would and was discharged from hospital two
weeks later, which is quite quick, says Dr.
Greenway. Some heart transplant patients
are hospitalized for more than a month
after their surgeries.
“I’m so excited and grateful knowing the
community stepped up to help purchase
HVAD equipment for the Alberta Children’s
Hospital,” says Cindy. “It will mean a lot and
make things just a little bit easier for families
like ours when they need it the most.”
These days, Reid is living a healthier, happier
and more independent life. He sleeps better
because he can roll on his side without
an alarm going off, he can have a normal
shower without worrying about getting his
controller wet, and he is able to run around
with his friends. As he recover,s Reid
continues to attend school at the hospital,
however he can go to classes and even play
dates without his mom or dad’s constant
supervision. In June, he will return to his
regular school part time.
Mike Weir Miracle Golf Drive for Kids
is coming to Calgary!
T
his summer, Canadian PGA golfer Mike
Weir is packing his clubs and heading
to Calgary for a great cause. The Masters
champion will hit the links at Silver Springs
Golf & Country Club along with local
golfers in support of the Alberta Children’s
Hospital Foundation.
The Mike Weir Miracle Golf Drive for Kids
was born out of an ambitious goal set by
Mike Weir and Children’s Miracle Network
in 2007. Together, they hoped to raise $10
million for pediatric healthcare in Canada.
So far, more than $4,788,000 has been
raised to support innovative programs,
state-of-the-art equipment and groundbreaking pediatric research at children’s
hospitals across the country.
On June 22, the Mike Weir tourney will
make Calgary its next stop as part of the
continuing journey to better the care for
children and families in need.
“I am excited to be bringing the 9th annual
Mike Weir Miracle Golf Drive for Kids to
Calgary this June,” says Weir. “I am confident
this great community will rally behind the
kids who need the Alberta Children’s
Hospital, so we are looking forward to a
very memorable – and meaningful — day
of golf.”
“We are so excited our city is the next stop
on this incredible journey and that families
in southern Alberta will be supported by
this amazing initiative,” said Saifa Koonar,
President and CEO of the Alberta
Children’s Hospital Foundation. “We are so
grateful to Mike Weir for sharing our vision
to provide sick and injured children with the
best possible care.”
Elizabeth Williams knows firsthand the
importance of supporting the specialists
and services at the hospital. Her son,
Will, was treated for a rare disorder that
prevented him from swallowing when he
was born. Thanks to incredible expertise
and high-tech equipment at the Alberta
Children’s Hospital, Will is now a happy,
healthy two-year-old who already shows
a real knack for golf. Elizabeth says she’s
thrilled the Mike Weir event will support
continued excellence at the hospital.
“The fantastic team at the Alberta Children’s
Hospital is able to do what it does thanks
to the vision of people like Mike Weir and
the generous support of the community,”
she says. “The money raised through this
tournament will go a long way in making a
great hospital even better at helping kids for
many years to come.”
Looking at two-year-old Will swing a golf
club, you would never know that he spent
the first three months of his life in the
care of surgeons and specialists at the
Alberta Children’s Hospital. Thanks to
generous support from the community, the
equipment and expertise Will needed to
thrive were there when he needed it most.
Don’t miss your chance to meet Mike and help the kids!
Register a foursome or as an individual golfer by visiting
childrenshospital.ab.ca/MikeWeir
Great sponsorship opportunities are still available. Please call Meghan Kociuba at 403-955-8875.
Robots to the Rescue
Alberta Children’s Hospital is the first in the world to use robots to help kids with medical procedures
investigator of the Alberta Health Services/
University of Calgary research. “I thought
children might respond to humanoid robots
to help them overcome painful procedures.”
Dr. Beran’s flu vaccination study found
children reported experiencing 50% less
pain when interacting with MEDi.
“It’s very exciting to see children’s reactions
and how we are actually reducing children’s
pain. Kids are already wired to accept new
technology. They have their laptops, their
cell phones, their gaming devices and now
we are bringing humanoid robots into an
environment where they can significantly
help kids.”
Seeing his new friend MEDi at the hospital helps Aidan
Sousa manage the pain of his monthly injections.
A
idan Sousa used to dread visiting the
Alberta Children’s Hospital for his
asthma treatment – a bi-weekly injection of
a powerful steroid.
Now, getting his needles is much more fun
for the nine-year-old because it means he
can hang out with a new pal – a friendly
robot who can help take his mind off the
pain.
Thanks to community donations, the
hospital now has four child-like robots to
comfort and calm patients like Aidan during
painful, frightening or intimidating medical
procedures — everything from vaccinations
and injections to bandage changes and
blood tests. The Alberta Children’s Hospital
is the first in the world to use humanoid
robots at the bedside for pediatric care.
The two-foot tall robots – named MEDi
(Medicine and Engineering Designing
Intelligence) – act as pain coaches. They
can speak 20 languages and are specifically
programmed with sets of behaviours that
match the steps of a medical procedure.
MEDi can also walk, give high fives and even
dance with a tap of a button on his head.
Aidan has needed the hospital his entire life.
He was born two months early with many
health issues, including underdeveloped
lungs that resulted in severe asthma.
Dr. Beran is currently building new
applications for MEDi to be used during
EEG tests and IV starts. The goal is also
to use MEDi to help reduce kids’ anxiety
in the waiting room and to educate them
about care before they leave the hospital.
Developers plan to further enhance the
technology by personalizing the interactions
through the use of facial recognition
software, so MEDi would be able to greet
children by name and customize his small
talk to each patient’s history.
Aidan’s mom Sheila says MEDi has proven
to be the perfect prescription for her son’s
pain.
“Knowing MEDi will help other children
who have the same
“I didn’t want to wake
“I’m
excited
to
see
struggles
as Aidan
up and get out of bed
makes
it
a
wonderful
on the days I had to go
MEDi. He helps me
addition to the hospital,”
to the hospital because
with my needles.”
said Sheila. “It’s great to
I knew it would be
see Aidan excited about
- Aidan Sousa
painful,” he says. “Now
going to the hospital –
I’m excited to see MEDi
that’s
a
real
indication
that MEDi works
and have fun with him while I’m there. He
wonders!”
helps me with my needles.”
Aidan first met MEDi in 2011 as part of The donor-funded robots
a research study to see if robots can calm will be used throughout
the hospital, including the
young patients during medical procedures.
Vi Riddell Children’s Pain
“Watching children screaming, struggling
and Rehabilitation
and pleading not to have procedures done, I
Centre.
realized they need to be easier, faster and far
less painful,” said Dr. Tanya Beran, professor
of Community Health Services and the lead
To see a short video of MEDi in action, visit www.childrenshospital.ab.ca/MEDi.
FUTURE GIFTS LEAD TO FUTURE CURES.
Your thoughtfulness today will create healthier futures for children. It’s easy and its rewards will last longer than a lifetime. Join our Family
of Hope and have a lasting impact on pediatric healthcare by:
„„ Leaving a gift in your Will
„„ Naming the Alberta Children’s Hospital Foundation as a
beneficiary of a life insurance policy
„„ Donating publicly traded securities in your Will
„„ Naming the Foundation as a beneficiary of some or all of
your remaining retirement funds (RRSPs and RRIFs)
Professional gift planners at the Alberta Children’s Hospital Foundation can help you build your legacy today.
Please call Sheelagh Mercier at 403-955-8837 or Heather Stevens at 403-955-8847.
Inspired by Care
How one couple plans to leave a legacy for children’s health
R
oger and Bev Ball decided to leave a
gift in their Will to support the hospital,
saying they value the opportunity to invest
in better treatments for the 90,000 children
and families who rely on its care each year.
“We feel privileged to support this
important work that will undoubtedly
benefit families in need for many years to
come,” says Roger. “To us, it’s a wonderful
legacy to leave behind.”
The gift, also known as a Bequest, is another
way the couple wants to give back to
the Calgary community, in which they say
they’ve been very fortunate to live and
work. The Balls have also been giving to the
hospital regularly for years and when they
were trying to choose a purposeful place
to direct their ongoing gifts and Bequest,
they were drawn to the Alberta Children’s
Hospital Foundation because of the scope
and calibre of care it helps make possible at
the hospital.
“It provides so many specialized services
that are designed for so many very
special children,” says Roger. “The
families who rely on those services
deserve the very best and we really
wanted to do what we could to
ensure this amazing facility continues
to be a leader in excellence.”
One of the biggest inspirations
behind the Balls’ decision to leave
a legacy gift is the thoughtful and
customized care that is provided to
each child who visits the hospital. “The
little details are what push the care at the
Alberta Children’s Hospital above and
beyond the benchmark,“ says Roger.
“Although the Alberta Children’s Hospital
is a major institution, we see that it still
provides a personal touch to each individual
child and their parents and siblings,” he says.
“We think that is so very meaningful.”
For more information about leaving a gift in your Will, please visit
www.childrenshospital.ab.ca/legacygifts
Join us for a relaxing
afternoon featuring fine teas
and refreshments.
Hear first-hand how your
future gift could lead to
future cures for children in
our community and around
the world.
Hope
Family of
Tea
Thursday May 28, 2015
Tea & Program 2:00 pm
Hospital Tours 3:00 pm
To reserve your space,
please RSVP by May 20 to
Shannon at 403-955-8867 or
sblack@achf.com.
Teacher, Kathy Penner (standing), says new community-funded programs are helping students and staff at Centennial High School speak
more openly about mental wellness.
Big demand for new mental health programs
Nearly 1 in 5 children has a diagnosable psychiatric concern - making mental health issues the single largest
health problem facing young people in our country today.To help address this, generous donations from the
community are funding three innovative programs to increase understanding and mental wellness for kids.
In the Classroom
across Calgary. The program provides
training that helps people distinguish
between mental health problems, distress
and disorders and how to access support
and resources. It incorporates mental
health into everyday classroom discussion,
reducing the tendency to sensationalize and
ostracize those who are affected.
it into Grade 8, 11 and 12 classrooms as
well.
Did you know that half the lifetime cases of
psychiatric disorders begin by age 14? Or
that bodily changes around puberty also
impact mental health?
Since it began two years ago, 1500 teachers
and school personnel have benefitted from
the program. The response has been quick
and overwhelmingly positive says Andrew
Baxter, Alberta Health Services Mental
Health Specialist. “In the past, in other parts
of the country where this program has
been offered, schools would generally send
one delegate to the training session. Our
experience has been that the majority of
schools want their entire teaching staff to
have the training because it is so desperately
needed.”
“In order for students to fully learn, they
need to be fully engaged. We need to get
them help for their mental health concerns
before they can be expected to thrive in
their school work,” points out Kathy Penner,
a teacher and coach at Centennial High
School who received the training early last
year. “This training equipped me to facilitate
great conversations with students and their
parents and then point them in the right
direction to get the necessary help for
what they’re dealing with – be it anxiety,
depression or attention issues.”
Recognizing that raising awareness and
understanding are key to improving
teenagers’ mental well-being, a groundbreaking program has been launched that
embeds mental health literacy into the
curriculum of grade 9 and 10 students
So far, training has been provided for
teachers in both the public and Catholic
schools boards in Calgary, as well as Rocky
View School Division. In fact, while the
curriculum was designed for Grade 9 and 10
students, Rockyview has been incorporating
Since kids spend more time in the classroom
than anywhere else except home, schools
are a logical place to work with them on
learning about, living with and seeking help
for mental health concerns.
Thanks to community support, two
programs have been introduced in Calgary
area schools so students and teachers can
increase their knowledge of mental health –
ultimately leading to greater understanding,
more timely and appropriate intervention,
broad-based prevention and reduced social
stigma.
TEACHING TEENS
“Word gets around and we also have
elementary school teachers requesting the
training,” says Baxter. “Teachers are dealing
with issues in the classroom on a daily basis
and have a strong need to be well-equipped
to help their students.”
EMPOWERING EDUCATORS
A program to identify and address the
concerns of younger children and teens is
also proving to be very successful. More
than 4000 people have signed up for online
To learn more about our
Brain Health initiatives or
how you can support these
Mental Health literacy programs,
please visit:
www.childrenshospital.ab.ca/
brainhealth
The first CanREACH class in May 2014, led by (first row from L-R, third from the left)
Drs. Geraldine Farrelly, Abdul Rahman, Sam Chang and Peter Jensen).
courses created specifically to address
issues relevant to teachers and students in
elementary and junior high schools in our
community.
Mental Health Online Resources for
Educators (MORE) is a free, web-based
training tool with detailed information on
specific topics, including: Creating a Learning
Environment that Promotes Mental Health,
Managing School Bullying, Anxiety in
Children and Adolescents, and Substance
Abuse Prevention in the Classroom.
Twenty different concisely and conveniently
packaged modules are available for teachers
across southern Alberta to take whenever
they can fit them into their busy schedules.
Feedback on the program has been very
positive with more than 95 percent of
participants indicating they were satisfied
with the courses they took and almost 90
percent saying what they learned would
likely improve their skills and improve
outcomes for students in the classroom.
Teachers reported that as a result of
the training, they will be “more attuned
to anxious students and will also be
incorporating more coping techniques for
the whole class”, that they plan to “integrate
the topic of mental health throughout the
curriculum”, “use strategies, relaxation and
schedule mental health time” and work to
“bring the walls of stigma down, taking it out
of the dark and into the light”.
In the Doctor’s Office
In Canada, suicide is the second highest
cause of death for children and youth
aged 10-24, second only to injury. Yet few
medical professionals appropriately screen
their young patients for mental health
issues.
With the vast majority of education in
medical school devoted to understanding,
diagnosing and treating physical illness,
primary care providers often lack adequate
training, experience and confidence in
managing mental illness.
Thanks to community support, Calgary is
the first in Canada to provide specialized
training for front-line health care
professionals through a program called
CanREACH (Canadian REsource for
Advancing Children’s Health). The sixmonth long course – modelled after a
successful program called REACH in the
United States – is designed to empower
pediatricians, family physicians and health
care providers to better identify and initiate
mental health interventions for children.
Only three people in Canada – Dr.
Sam Chang, Dr. Abdul Rahman and Dr.
Geraldine Farrelly – have been certified
to provide this training. All three live in
Calgary and are now helping our city
become a national leader in addressing the
care gap. Their goal is to train 50 people
per year for five years, resulting in 250
more doctors and healthcare practitioners
with better mental health knowledge and
skills enabling them to better diagnose,
treat and refer children appropriately.
The first two sessions filled up within
weeks of their offering and there is already
a wait list for training in May and November
2015. Feedback from participants has been
remarkable:
“CanREACH was not only the best
mental health conference I have
attended, it should be attended by
all physicians who deal with children’s
mental health complaints in the province.
Transformational in how I will approach
mental health concerns.”
- Dr. Michael From
In fact, of those who attended, 100% said
what they learned through the training
would change their practice. Dr. Chang and
his colleagues say they are grateful for the
generous community support that made
this program possible. “Now, families,
children and teens in our community will
get the help they need sooner because
more doctors are equipped to understand
the issues they’re facing. I have no doubt
that this investment will change and save
kids’ lives for years to come.”
UPCOMING EVENTS
For information about these or other events to support the kids at the Alberta Children’s Hospital, please visit childrenshospital.ab.ca
n APRIL 20 – MAY10
Pizza 73 Slices for Smiles Campaign
n JUNE 26
ECL Choppers for Charity
Motorcycle Ride
www.childrenshospital.ab.ca/ECL
Miracle Month of May
Fundraising Campaigns
n APRIL 27 – MAY 31
Costco
n JULY 4
55th Annual Chinook Centre
Stampede Breakfast
n APRIL 30 – MAY 23
Walmart
n AUGUST 13
Dairy Queen
Miracle Treat Day
n MAY 15 – 24
KFC
n MAY 1 – 30
ATB Financial Teddy for a Toonie Campaign
n MAY 8 – 21
Save-On-Foods Round Up Campaign
n JUNE 1 – 30
TD Bank Monthly Donor and
Fundraising Campaign
n JUNE 22
Mike Weir Miracle Golf Drive for Kids
www.childrenshospital.ab.ca/MikeWeir
n OCTOBER 3
Building Hope for Kids
“A Night in Rio” Gala
buildinghopeforkids.com
n AUGUST 22
Sears Great Canadian Run
searsgreatcanadianrun.com
n SEPTEMBER 26
Run for Calgary
runforcalgary.org
n SEPTEMBER 27
RE/MAX Family Fun Day
www.remaxfamilyfunday.com
WATCH YOUR MAILBOX!
The Kinsmen Lotto for the Alberta Children’s Hospital
launches May 11, 2015!
Lottery licence - 377536
Return undeliverable Canadian address to:
2888 Shaganappi Trail NW
Calgary, AB T3B 6A8