Spirit of Giving


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You never know what lies ahead for you, your family, or friends.

IWK Health Centre Patient, Ben Harris

Ben Harris

Have you ever wondered what IWK stands for?  Officially “Izaak Walton Killam Health Centre” but to me it means, “Investing in Wonderful Kids”.  It is a truly inspiring place that we, as Maritime parents, treat as an insurance policy – we want to have it if we need it but hope to never have to use it.  At least that was our philosophy until the day we needed it and our appreciation for the IWK became a reality.

That day came for us shortly after Ben’s fourth birthday.  Our healthy active boy came down with a cold.  It was just a cold, not so bad as to require medical attention but enough of a cold to keep him home from daycare.  Then, little purple dots appeared all over his body and this Mommy went into panic mode. We went to see his family doctor immediately.  Those purple dots were petechiaean indication of low platelets which a blood test confirmed. We were admitted to the Prince Country Hospital in Summerside, PEI.

It was here that Ben was given his first round of IVIG (intravenous immunoglobulin – a plasma protein replacement therapy that is given to immune deficient patients who have decreased antibody production capabilities) to help boost his platelet count.  During this transfusion he had a reaction and the transfusion had to be stopped.  This was the day our relationship with the IWK began through consultation with our local hospital.  When Ben’s numbers failed to rebound we were sent to the IWK for an appointment with hematology and for bone marrow testing.  Bone marrow results revealed that everything was working fine and because of his history of reacting to the treatment we again decided to give his body time to repair.

As time went on his platelet numbers failed to increase. He underwent another bone marrow test and consult with oncology. The results once again revealed that his bone marrow was working perfectly fine. Next we were sent to immunology.  Here his immunologist, hematologist and oncologist thoroughly tested Ben for every possible cause. All of these tests resulted in a diagnosis – Ben suffers from autoimmune conditions called thrombocytopenia and neutropenia.  Ben has had bone marrow testing, ultrasounds, MRIs, x-rays, blood work, and even dental checks at the IWK to ensure his health is being fully and continuously monitored.

While his team hasn’t been able to isolate the cause of his condition they have safely and confidently found a way to manage his platelet count which allows him to run and play!

So why should we give to the IWK?  The answer is simple; you don’t know when you are going to get a phone call saying that the specialists there want to see you the next morning.  You never know what lies ahead for you, your family or friends.  Having a facility that focuses on children and all their intricacies in our region is worth supporting.

Please consider supporting the upcoming IWK Radiothon on 95.1 FM CFCY presented by Credit Unions and the Co-operators Agents of PEI.

Sincerely, Heather Harris (Ben’s mom)

Learn more about Ben and other PEI IWK patients during the IWK Radiothon on 95.1 FM CFCY, presented by Credit Unions and The Co-operators Agents of PEI – broadcasting live October 30, 2014. Thank you to our generous sponors: 95.1 FM CFCY, Credit Unions, The Co-operators Agents of PEI, Charlottetown Mall, Rodd Hotels, and Global Convention Services.

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Help IWK children live happily ever after.

Stephanie Reid is the Program Lead, Marketing Strategy at the IWK Foundation and a member of the runDisney community.

Children's Miracle Network BalloonHave you ever considered running a race but never had the right motivation? Are you an avid runner looking for a new challenge? Have you been looking for an exciting and unique way to support the IWK Foundation? If you answered yes to any of these questions then this is the blog post for you.

Children’s Miracle Network Hospitals® is the presenting sponsor and celebratory charity of the Disney Princess Half Marathon Weekend at Walt Disney World Resort in Orlando, Florida. Funds raised for Children’s Miracle Network Hospitals in conjunction with this magical event will help kids grow up happily ever after. Children’s Miracle Network Hospitals raises funds and awareness for 170 children’s hospitals in the U.S. and Canada, including the IWK Health Centre located right here in Halifax, Nova Scotia.

Pirates of the Caribbean on the race route of Disney's Princess Half Marathon 2014.

Pirates of the Caribbean on the race route of Disney’s Princess Half Marathon 2014.

It’s rare when two of your passions collide so perfectly. I’ve been participating in runDisney races since 2010 when I completed my first marathon during the Walt Disney World Marathon Weekend. And I have to say, it wasn’t hard to get hooked as there is nothing quite like running a runDisney race. The costumes, entertainment and the overall experience of running through Disney theme parks and resort areas make runDisney races a bucket list item for any aspiring or seasoned runner.

So naturally, when I learned I could participate in a runDisney race in support the IWK I came running (pun intended). Children’s Miracle Network participants can support their local children’s hospitals by signing up for the Princess Half Marathon or the Glass Slipper Challenge (a 19.3 mile adventure over 2 days). Glass Slipper challenge participants will run the Disney Princess Enchanted 10K on Saturday, followed by the Disney Princess Half Marathon on Sunday. Currently all races are sold out to the public but you can still participate by signing-up through Children’s Miracle Network Hospitals® or another participating charity or travel provider.

So are you in? Here’s the run-down (again, pun intended – I just can’t help myself!):

  • Sign-up for either the Princess Half Marathon or the Glass Slipper Challenge at princesshalfmarathon.childrensmiraclenetworkhospitals.org
  • Fundraise the required minimum amount for your race to support children and families at the IWK Health Centre
  • Make your family’s travel arrangements
  • Pack your bags for the happiest place on earth
  • Just keep running…

The upcoming Glass Slipper Challenge will mark my 5th and 6th runDisney races, and they certainly won’t be my last. But for right now, my focus is on fundraising and supporting this wonderful cause that is very important to me. As an extra incentive to my supporters, if I reach my minimum fundraising goal by August 18, 2014 I have promised to come to work dressed up like Mickey Mouse and stay in character for an entire business day. That’s right, I will do absolutely anything for this cause and the children and families at the IWK Health Centre.

Have a magical race and thank you for your support!


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Made-to-Order Independence

This article was written by Debra Wells-Hopey for the Spring/Summer issue of Izaak Magazine – an in-depth, behind the scenes, all-access publication highlighting the incredible, everyday happenings at the IWK Health Centre.

11-year-old Taya and occupational therapist Julia Gates

11-year-old Taya and occupational therapist Julia Gates

How a customized wheelchair program provides quality of life for hundreds of kids.

Taya is spirited, bright and patient as she describes the way she gets around in the world.

“When I move my head left, I turn left,” she says enthusiastically, even though she must have explained this to people many times over. “When I move my head right, I go right. And when I move my head back, I go straight forward.”

At 11 years-old, Taya has Cerebral Palsy and is a long time visitor to IWK Specialty Seating, a service within the IWK’s Rehabilitation Service. The service offers assessment and provision of customized seating and positioning equipment, including seating inserts, wheelchairs, special-needs strollers, bath seats, car seats and toileting aids.

Julia Gates, Occupational Therapist in Specialty Seating, and Nancy Cashen, Operations Manager for Rehabilitation Services, have known Taya since she was three years old. “This program is designed to assist children who can’t walk on their own, most often due to Spina Bifida, Muscular Dystrophy or Cerebral Palsy,” explained Gates. “Children are referred to the program as early as 14 months and stay with us until they are ready to transition to adult health care.”

Gates explained that although children this young are able to still use a stroller, it means they are dependent on others to get around — at an age when they want to start exploring the world on their own.

“Independence is an essential part in a child’s growth and development,” added Cashen.

Specialty Seating at the IWK consists of Cashen and Gates, as well as a Specialty Seating Technician, David Beattie, and a Funding Coordinator. Together, along with the family, this team determines what kind of wheelchair would be best for the child.

“We take many factors into account,” says Gates. “For instance, a level of hand mobility is essential for maneuvering a manual wheelchair, but not necessary for a power wheelchair.”

The amount of seating support required is a complex assessment that is completed by the occupational therapist and takes into account the disease prognosis, planned orthopaedic surgeries, maintenance of skin integrity, comfort, functional abilities and wheelchair skills. All children are different, and the amount of support required could be viewed as mild, moderate, or complex. Generally, seating for a mild support is not custom made, and may be arranged through a local wheelchair supplier in the community. The seating for children who require moderate or complex support is custom made by the Specialty Seating Service at the IWK.

There is a workshop onsite at the IWK where Beattie employs his expertise. For specialized seating, an impression is made on a mould that resembles a large bean bag. This shape can then be transferred to a 3D digital model on the computer. These images are sent via email to the United States where the only machine of its kind in North America manufactures the seat. It is then shipped to the IWK for fitting.

As for Beattie, he has been with the hospital since 1989. He was familiar with an Occupational Therapist who suggested he may enjoy the work. Considering Beattie has remained in the program for more than 24 years, it certainly is a great fit.

“This is the perfect job as far as I’m concerned,” says Beattie. “I get to work with my hands and help people simultaneously. The work is challenging and rewarding.”

Beattie’s workshop looks much like any other, yet very unlike anything you expect to see in a hospital. There are various materials stored: pieces of repurposed wheelchairs, three industrial-sized sewing machines, neoprene for upholstering, two band saws, a table saw and a wealth of tools.

“When we first see someone we measure them for a seat using a fitting frame. From these measurements I construct a seat out of foam and plywood and I upholster it. I also adjust and repair wheelchairs as needed. I’d say one of my favourite parts of my job is going on the mobile clinics. Several times a year we go to Cape Breton and the Annapolis Valley. At times we go to schools here in HRM, or even homes.”

Gates explained that the first order of business when a child needs a wheelchair or seating device is to meet with the family and get to know their needs.

“This initial meeting is so important,” says Gates. “It’s when we first get to meet the child; establishing their needs, administering a postural assessment, taking measurements, then making recommendations.”

“Recently we had a child who needed a new power wheelchair. We had two styles and tried them both in the home to see which operated better in that specific environment. It needs to work in the child’s daily life.”

Having the right wheelchair and seating can make all the difference in the world when it comes to quality of life — kids need to participate with classmates, explore their environment and have a sense of independence.

“When a child receives their first wheelchair it is often a period of growth for both the parents and the child,” says Gates.

Taya’s mother Christine knows all about it. She has been taking Taya to Specialty Seating and working with the team for eight years. Taya was only three when she received her first wheelchair and met the group at Specialty Seating. She was outgrowing a stroller at this point, not only in a physical way but also as a growing child her needs were changing — she had a desire to be independent, to be able to explore the world on her own.

“Although she was small enough to still use the stroller, it no longer seemed to be the appropriate choice,”explained her mom. “The chair was so much better for her

Izaak#Provincial#05-02-2013#A01posture, and allowed her to be eye level with her peers. Her diaphragm was also better supported which made her breathing and therefore her speaking so much better.”

Taya was born with cerebral palsy. She enjoys her grade five class and likes to read — especially Harry Potter books. She also swims and uses a sit ski at Wentworth ski hill.

“I have both a manual and a power chair,” explained Taya. “I use the power chair at school. Some places are easier to use a wheelchair in than others though.”

Although Taya drives herself around by using head movements, the wheelchair must be steered remotely by a device similar to a joystick when it is being loaded into the family van. Apparently, according to a laughing Taya, dad is an expert at it, while mom, who is quick to agree, isn’t as deft.

Taya was eight when she got her first power chair. She started at six years old “training” with a joy stick, but it was a lot of work and a head array began to make more sense. The family visits Specialty Seating about once a year.

“To a certain extent, the chairs grow with her. Especially the manual chair, which she will have for about eight years,” explains Christine. “The power chair needs changes or replacing more frequently.”

As for cost, the family is fortunate that both Christine and her husband have good health care plans, however, they still certainly incur costs. The head array alone cost $10,000, which is as much as the chair. Then there are the costs of converting the family van with a manual ramp that has to be lifted and unfolded. A power system is even more expensive. This is the reality for families with a wheelchair. Taya gets to continue to visit the team at Specialty Seating until she is ready to transition to adult health care.

“I can’t say enough about the program and the staff,” says Christine. “When your child is first diagnosed, you’re in a daze. You don’t know where to go or what to do. They have helped us immensely, even in emergency situations.”

One such situation was during a weekend when Taya’s chair was accidentally run over, crushing one of the wheels. It meant facing a whole weekend propped up or in bed. Not a great thought for a young, energetic girl like Taya. Christine contacted Gates and Beattie who were more than willing to go into work on a Saturday to get the chair fixed. Says Taya, “Dave and Julia are extremely nice people and I would come to them all my life if I could.”

And there’s no higher praise than that.

To read the full issue of Izaak magazine visit www.iwkfoundation.org/izaak

Make a gift to the IWK Health Centre Foundation.


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Breathing Space

This article was written by Tom Mason for the Spring/Summer issue of Izaak Magazine – an in-depth, behind the scenes, all-access publication highlighting the incredible, everyday happenings at the IWK Health Centre.Dr. Laine Johnson brings highly-specialized airway reconstruction surgery to the IWK

Larkin looks at the plastic fish and bubbles

Larkin looks at the plastic fish and bubbles

Larkin Pottle was born four years ago with tracheomalacia, bronchomalacia, and subglottic stenosis of her trachea — conditions that severely restricted her ability to breathe on her own. Her parents, Rhonda and Brent Pottle, struggled with the tracheotomy that allowed her to survive the process. As she grew, breathing on her own started to look

Like a possibility; surgery to allow this to happen was the next step for the Pottle family. Tracheotomies are one of the most vital surgical procedures in modern medicine, but they are actually very old. The surgery is depicted on Egyptian artifacts more than 5,000 years old and described in Sanskrit texts from around 2,000 BC. A tracheotomy involves placing a tube through an incision in the neck to bypass the nose and mouth and allow air directly into the trachea. Every year they save countless lives; but for most young children who have undergone the procedure,

a normal life doesn’t begin until the tube has been successfully removed. That can prove to be difficult.

Dr. Liane Johnson uses a scope to view Larkin's airway.

Dr. Liane Johnson uses a scope to view Larkin’s airway.

That’s where Dr. Liane Johnson comes in. Dr. Johnson is a pediatric airway surgeon at the IWK, the only doctor in Atlantic Canada to perform a specialized form of airway reconstruction surgery in children. The innovative technique involves using the child’s own rib cartilage to expand the scarred airway to attempt to achieve a normal diameter airway (air passage). Because the technique relies on tissue from the child’s own body, there are no issues with rejection.

Dr. Johnson learned the complex procedure during a two-year fellowship at the Cincinnati Children’s Hospital Medical Center under world-renowned pediatric otolaryngologist Dr. Robin Cotton, who pioneered the technique 30 years ago. She has already performed about 20 of the surgeries at the IWK. She says the procedure offers the patient and family a degree of independence that is life-changing.

“With proper patient selection, they can be very successful surgeries,” she says. “It’s rewarding to see the results.”

Larkin Pottle’s conditions were serious and because she needed constant medical care, Larkin could never be left alone. This left her family with the task of learning how to take care of her properly at home. Any kind of mucus plug or blockage of the tracheostomy tube could also be disastrous. It was a 24-hour-a-day job for Rhonda and Brent,

one that required plenty of professional help. “We had to get professional respite care at night so that we could get some sleep,” says Rhonda.

Rhonda Pottle cuddles her daughter Larkin Pottle as they wait for Larkin's appointment at the IWK.

Rhonda Pottle cuddles her daughter Larkin Pottle as they wait for Larkin’s appointment at the IWK.

Along with the basic skills that every new mother learns — feeding Larkin and changing her diapers — Rhonda quickly became adept at a number of medical techniques, including suctioning a tracheotomy tube and performing mouth to trach resuscitation. If Larkin accidentally removed the tracheostomy tube, the Larkin family had to be prepared to perform CPR.

“It’s not that difficult. Anyone can learn to do it as long as they’re not afraid of it,” says Rhonda. Larkin was approaching her second birthday when doctors discovered she was breathing through her nose and mouth around the tracheotomy tube. It was good news. It meant the airway was growing and the problem was correcting itself. But scar tissue had formed, and Larkin’s airway needed to be repaired before the incision in her trachea could be permanently closed.

This picture was taken at the level of the vocal cords showing complete obstruction of the subglottic airway, just beyond the vocal cords.

This picture was taken at the level of the vocal cords showing complete obstruction of the subglottic airway, just beyond the vocal cords.

Rhonda began the search for a doctor who could do the surgery. She and her husband had already made plans to travel from their Stephenville, Newfoundland home to Cincinnati to meet with Dr. Cotton when they heard about the IWK program. “I heard there was a doctor in Halifax who had studied with Dr. Cotton and was using the same procedure.” The Pottle’s first visit to Halifax was a little disappointing. Dr. Johnson examined Larkin and told the family to come back in three months for reassessment as it was

too soon for the operation. “That’s the hardest thing to say to parents: ‘She’s not ready,’” says Dr. Johnson. “But if you do the surgery too early the consequences can be devastating. The last thing I want to do is set up a spiral of failure. Sometimes it’s just safer to wait.”

This picture was taken just below the vocal cords showing a completely open subglottic airway following placement of rib grafts.

This picture was taken just below the vocal cords showing a completely open subglottic airway following placement of rib grafts.

When the day finally came, it was a long one. The Pottles spent eight hours waiting for Larkin’s surgery to end. Dr. Johnson constructed two rib grafts to expand the damaged airway, placing them carefully in the trachea below the little girl’s voice box. When it was over she was sedated and ventilated in the intensive care unit for nine days, but after stent removal she was soon breathing on her own. It was a success.

There have already been many milestones for the Pottle family. Larkin had a bout of the flu during the winter – a normal rite of passage for most four-year-olds, but one that would have brought on a serious medical crisis before the surgery. This time it was no big deal, says Rhonda. The family left for a Florida vacation in March, the first family trip since Larkin was born that didn’t centre around a medical appointment. Most importantly, Larkin is gaining a measure of independence that she didn’t have before. She’s getting ready to attend preschool and is making friends her own age for the first time. “She loves other kids,” says Rhonda. “Finally she can be a kid herself.”

To read the full issue of Izaak magazine visit www.iwkfoundation.org/izaak

Make a gift to the IWK Health Centre Foundation.


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We count our blessings every day.

Lindsay Reynolds is a Member Service Counselor at CAA Atlantic in Saint John, New Brunswick and mother to five year old Seth, an IWK patient.

The IWK is holds a very special place in my heart. Without them, my life just wouldn’t be the same. At only 27 weeks, I gave birth to my son, Seth, at the Saint John Regional Hospital here at home. He was so tiny! Soon after being born, we experienced a setback as his weight plummeted to just 1 lb 1oz.  But as each day passed, my little man grew stronger, and at 22 days old, we were finally able to hold him for the very first time. Words cannot express that moment.

Baby Seth

Baby Seth

Seth soon began experiencing complications once again, and at 36 days old he was diagnosed with Necrotizing Enterocolitis, a potentially fatal inflammatory bowel disease that 10 per cent of premature infants develop, as well as a blood infection. I will never forget the moment that we were told that we were being transported to the IWK in Halifax. Up until then, I always viewed the IWK as a world class facility, however something I would never have a need for.  Five days later, after consultation with the IWK general surgery team, we were boarding the Nova Scotia life flight helicopter and were on our way to the IWK.

Seth fought like a trooper during his 89 day stay in the IWK NICU 2-critical care unit as he faced a number of issues such as,  Necrotizing enterocolitis , infections, apnea of prematurity, bronchopulmonary dysplasia, pneumonia, various blood disorders, serriatia colonization, inguinal hernias, hypospadius, small bowel resection and an Ileostomy.

Although this was an incredibly challenging time for my family, we always felt at ease knowing that our son was being cared for by the best doctors in the Maritimes.

One day, on a bright and sunny afternoon in the IWK gardens, I was able to take my son outdoors for the very first time – he was 125 days old. Soon after, we were able to take him home. Since then, we have returned to the IWK for a Hernia repair and an ileostomy reversal and check up.

Seth, age 4.

Seth, age 4.

We count our blessings every day.  Life would be very different if it were not for care and knowledge of the IWK staff and the special facilities and equipment they use. This is why I am so proud to be a part of an organization that understands the importance of supporting pediatric health. From April 15 – May 26, 2013 CAA Atlantic offices will be raffling a trip for two to Italy, with proceeds going to the IWK Foundation and the Janeway Foundation of Newfoundland and Labrador. Funds raised through this raffle will be used to support the most urgent care needs of the hospitals. I worked at CAA and participated in our fundraising initiatives for the IWK each year for five years before my donations and efforts took on a whole new meaning.

If it were not for the IWK team, facilities and equipment, the very best part of my life would not be alive today!

Make a gift to the IWK Foundation.


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Getting into the Swing of Spring!

The Child Life Activity Area at the IWK Health Centre is ready for colourful flowers, green grass, and warm winds. On this past Thursday, this innovative area of the Health Centre held their annual Spring Party. The Spring Party is an opportunity for young IWK patients and their families to celebrate the end of Winter with games, crafts, tasty treats, and a classic egg hunt.   This event is a great chance for kids to come together to relax and have fun. The IWK Child Life department works tirelessly to make sure the kids at the IWK get to enjoy the usual traditions of childhood, and, as you can see by these colourful pics, they were able to do just that.

We just wrapped up Child Life month! Read more about this incredible organization and how you can help.

To make a gift to the IWK Foundation visit www.iwkfoundation.org.

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Ready for the egg hunt!

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Spring colours

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Spring chicken

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Ready for decorating

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Colourful icing – almost too pretty to eat!

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Let the games begin!

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Artist at work.

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Delicious!

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Sprinkles for Spring!

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Yum!

Yum!


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Colours for Cancer

Natasha McCarthy, from Mount Albion, Prince Edward Island, is the organizer of Colours for Cancer – fundraising initiative  in Montague, PEI, to raise money for pediatric cancer.

I’ll never forget the date because it was the day before my birthday. The day I heard four-year-old Autumn Newell was diagnosed with Leukemia. Autumn and my four-year-old, Samantha, were in the same dance class together. I went to school with Autumn’s Mom, Stacey, but grew closer to her the previous year through our children’s association. I remember reading her Facebook post that day.

“Worst day of our lives, please pray for our little Autumn”.

Children's Artwork available for auction.

Children’s Artwork available for auction.

I didn’t know what that meant at first but being from a small community word spread quickly that Autumn was at the IWK and was a couple days later diagnosed with Acute Lymphoblastic Leukemia and about to start the battle of her life. As a mother of two girls myself, as did many I’m sure, tears streamed down my face. I prayed for them. I sobbed uncontrollably alone in silence for the heartache, fear and helplessness her parents Stacey & Donnie must have been feeling. I could not help but think how in heaven’s name do you explain that to your child? Where would you even begin?

Since that helpless day I have watched a miracle be born. I have watched through Facebook a four-year-old little girl turn into a warrior of strength, courage, determination and positivity. A video was posted three days later of her at the IWK saying “Kick Cancer in the Butt” and that slogan has now been adopted by a community of people. We wear bracelets with her name and slogan on them in support of her fight. In every photo whether it be in a hospital bed or at home she carries a huge smile on her face. She shows bravery far beyond what any four-year-old should ever have to possess. I have told her mother Stacey on numerous occasions that she is destined to do great things WHEN she wins this fight. This battle was meant for her, because she is so strong and will show others the way!

IMGP3480I knew I wanted to do something big to help Autumn’s journey to recovery and help with such a financial burden. So I decided I would do something huge! I would shave my head in an effort to raise money, but I would tell no one and wait for a while. Help often pours out quickly at the beginning of diagnosis but I knew this family at a 2.5 year battle ahead of them and money would run out. So I waited, and it is now obvious to me there was a reason I chose to wait. Because five months later when I decided the time was right after watching how amazing she has been I knew I couldn’t only help Autumn, I needed to help other children battling cancer too. She has inspired me to be a better person – to help as many as I could and make this much bigger. So I have included the IWK’s Hematology & Oncology Department in my fundraising efforts as I know she needs them to win her fight as do & will other Children.

Colours For Cancer was an idea to involve my children in raising money and helping others. A small idea that got big very fast. On Saturday, March 9th I had 54 amazing children come to paint a canvas and donate it to be auctioned off. This Friday, March 15th from 5:30-7pm there is an Art Exhibit and Final Auction (online bidding takes place all week).

One of the many young artists.

One of the many young artists.

The children are so very excited about it and the bid’s are rolling in already with some paintings as high as $88 in just two days! Over 8,000 people have viewed the Auction Album on Facebook which is incredible. I hope to raise a substantial amount of money through this event as well as some others in the coming weeks to help the IWK. We are so very blessed to have this facility available to us in the Maritimes and it takes money to offer the services it has. I have always donated through the Telethon since having children myself but now it’s time to step it up and find bigger and better ways to donate more, because we just never know when we might need the facility ourselves.

I thank Autumn for being so amazing and inspiring me, she is a blessing and her fight will end triumphantly thanks to her courage and many others including the IWK!

For other details on fundraising efforts, please visit https://www.facebook.com/#!/FundraiserForAutumnQeiiIwk