Spirit of Giving


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I’m Tristan Gallant, I’m 10 years old, and I approve of this message.

Moncton Change Bandit, Tristan Gallant

IWK Moncton Change Bandit Hero, Tristan Gallant

Tristan Gallant is this year’s Moncton Change Bandit Hero for the K94-5 & 103.9 MAX FM Cares for Kids IWK Radiothon. For the last few weeks, Tristan has been working hard to help raise $15,000 to support the most urgent priorities of the IWK Health Centre.

I felt very happy when the IWK Foundation asked me to be the IWK Change Bandit Hero this year. It’s really nice [to be selected] and really fun being on the radio. It’s really really fun. Everybody wants to talk to me and take pictures of me.

You can raise money as a change bandit by doing things like a sock hop and a hat day at school; by telling everyone you know how great the IWK is, and by collecting coins at a big store like Superstore. Your parents and friends can put their change all together and put it in your loot bag.

I like the nurses and doctors and Child Life people at the IWK. All the people there like Kate, and Carol, all the doctors and nurses, and all the rest of the people there are really nice to me.

The IWK is important to me because they helped me and a lot of other kids feel better, and they also saved my life when I had Cancer.

People should give money to the Change Bandit program to help IWK buy even better machines and better medicines to help kids feel better. I’m Tristan Gallant, I’m 10 years old, and I approve of this message. 🙂

The 5th Annual K 94-5 & 103.9 MAX FM Cares for Kids IWK Radiothon will be broadcasting live from Champlain Place Mall February 20 & 21 from 6 a.m. to 6 p.m.. 

Make a gift to the IWK Radiothon.

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Change Makers – Sonja

This article is a series of three, written by Tom Mason for the Fall 2013/Winter 2014 issue of Izaak Magazine – an in-depth, behind the scenes, all-access publication highlighting the incredible, everyday happenings at the IWK Health Centre. A stay at the hospital can be tough, but for some exceptional young people, it’s also a time to grow , gain strength and learn about who they are. 

Sonja Weilgart-Whitehead

Sonja Weilgart-Whitehead

At the age of 18, Sonja Weilgart-Whitehead is already an old hand at talking to the media. The Herring Cove teenager was just 15 when she spearheaded a media campaign that focused attention on evacuation policies at Halifax Schools – a campaign that changed those policies for students with mobility issues.

Sonja has quadriplegic cerebral palsy, a condition that comes with significant mobility challenges. “My high school had an evacuation policy that said they couldn’t carry disabled persons out of the building because it would risk injuring the person responsible for carrying the,” she says. “Instead, we were supposed to go to a designated safe area and wait for the fire department.” But the designated safe room in Sonja’s high school was located right above a propane tank, with furniture blocking the only window that rescue personnel could use to access it. “I know that if my school ever wet up in flames, I was going to be toast.”

I was a situation that Sonja had no intention of ignoring. She and her mother contacted the media and began a series of interviews to shed light on the topic. The campaign immediately caught the attention of Nova Scotia cabinet ministers Ramona Jennex and Marilyn Moore who offered her an apology and set out to change the school policy. “They changed it for everyone in the province,” she says. “It means a lot, even though I was almost ready to graduate. With the old policy, it was like they were saying my life wasn’t as valued as the other students.”

Sonja is used to overcoming challenges. Her first extended stay at the IWK began the day she was born, when she was 18 months old. She’s made many trips to the hospital since then. “Over the last six years I’ve been getting a lot better because of a phenomenal surgery that the IWK gave me. Now I can walk without tangling by feet, without being crumpled over. I can swim a lot better too. It’s forever changed by life.”

Today, Sonja is studying for her Bachelor of Arts (honours) degree at Carleton University in Ottawa, and received the Robbie and Jean Shaw Scholarship. She plans to go on to become a lawyer advocating for people with disabilities. She chose the university because of its unique program for physically challenged students – a program that includes 24/7 attendant services and full wheelchair accessibility. She is also nationally-classified para-swimmer on the Carleton varsity swim team and involved in horseback riding, sailing, skiing and rock climbing.

This story and many exciting others are available for FREE though Izaak Magazine’s fully interactive mobile app, available for download on the iTunes Newstand and Google play. You can also read Izaak magazine online through your desktop computer.


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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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What being part of the IWK family means.

Mary Thibeault is the Phone Volunteer Trainer in Halifax for the 29th Annual IWK Telethon for Children on CTV. 

To me, Telethon means a time to recognize why we are here and what the IWK means to our community and to our families.

Mary Thibeault, Halifax Phone Volunteer Trainer and Hilary.

Mary Thibeault, Halifax Phone Volunteer Trainer and Hilary.

As a long time employee of the IWK in clinical practice, management and support roles, I have had the privilege of working with families and staff in both professional and volunteer roles. My first experience with Telethon was over 25 years ago as a staff nurse working in the Neonatal Intensive Care Unit where we shared stories that demonstrated the courage and passion of the most fragile patients and their families. At that time, as now, hearing how the IWK makes a difference to the lives of so many members of our Maritime community instills not only a sense of pride, but also a sense of significance.

I always believed it was important to share that sense of pride and to, in some way, give back what I could. So I started volunteering at the IWK Telethon, first as a telephone operator and eventually as the person responsible for insuring the hundreds of telephone volunteers are trained for their very important role. When my daughter was about three years old, I began bringing her along so that she could see the show and experience the excitement of a television production. I would have her with me during training sessions as my assistant and she would dutifully point to the different parts of a giant pledge form as I would describe how they needed to be completed.

She continued to come with me until one year, at age 11, she decided she had better things to do on a Sunday afternoon and went to a friend’s house instead of coming with me. So I went along conducting the training sessions solo. At the end of one of the sessions a long time telephone volunteer approached me and asked me where my daughter was. He said he had so enjoyed seeing her grow up over the years, it was an important part of Telethon for him, and he missed seeing her that year. I was deeply touched that he had remembered and at that moment began to realize what Telethon means to so many people.

I went home and told my daughter the story. She hasn’t missed a Telethon since. When she turned 13 we decided she was old enough to have her own job at Telethon and she was thrilled when she received her first official Telethon Volunteer name tag. Now, every year, she works as a “runner” on the set taking completed pledge forms to their appropriate location. The IWK Telethon has helped her understand the importance of philanthropy and how just a little contribution of time can mean so much to our community. It is a lesson I could never have taught her myself and one that I am extremely grateful for. That is what being part of the IWK family means. We help make a difference to our community and they help make a difference to us.

Make a gift to the 29th Annual IWK Telethon for Children on CTV.


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Volunteering is a part of who I am.

Volunteers strengthen our communities and donate their time, talent and energy to improving the lives of those around them. April 21- 27 is National Volunteer Week, a time to recognize individuals who are making a contribution to their community. Dorothy Miller, of Saint John, New Brunswick, shares why she volunteers with the IWK Health Centre Foundation.

Dorothy & Lee at the IWK Radiothon in Saint John

Dorothy & Lee at the IWK Radiothon in Saint John

Volunteering is a part of who I am. Finding a way to give back to my community has always been important to me.  Over the years I have given back to various events and organizations that hold a special place in my heart such as the IWK Health Centre.

Why the IWK you may ask? Although I do not have a personal connection to the Health Centre there are many individuals in my life who have benefitted from its services. We all know of someone whose life has been touched by the outstanding care that the hospital provides. This is why I jumped at the opportunity to get involved with this remarkable organization.

The health and wellbeing of children has always been a passionate interest of mine, so volunteering for the IWK Foundation felt like a natural fit for me. Last year, the IWK held its inaugural Radiothon in Saint John. Having experience as a training coordinator, I volunteered to help coordinate other volunteers needed to help make this event a success. I even recruited my husband Lee who jumped at the opportunity to get involved.  Although I knew that this would be a fun opportunity, it was better than I could have ever imagined! The energy that filled McAllister Place during our two-day Radiothon in 2012 was contagious, as the phones rang with calls from individuals from all over the Greater Saint John area who wanted to give to help advance critical care at the IWK. It was inspiring.

Last year I was approached to assist with the organization of the 2013 IWK Telethon at the Saint John broadcast site. It was an easy decision to make! I’m honoured to be involved with an organization that touches so many peoples’ lives. It feels good to give back to my community and if you have a chance to volunteer with this great cause in some form or another I urge you do it.  I’m excited to see what this year’s IWK Telethon will bring, and I have no doubt that it will be the best one yet!

Dorothy Miller, Chair, Saint John Telethon Operations Committee & Volunteer Coordinator, Saint John Radiothon

Volunteer  with the IWK Health Centre Foundation.

Make a gift to the IWK Telethon for Children on CTV. 


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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