Spirit of Giving

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A day I’ll not soon forget.

Laura MacAulay is a Member Service Counsellor at CAA Atlantic in Charlottetown, PEI and mother to Alexander and Porter, IWK patients.

July 8th, 2013, is one day I’ll not soon forget. At 28 weeks pregnant with twin boys I found myself being airlifted to the IWK from my local hospital here on P.E.I. My blood pressure was high enough they thought they may have to deliver my premature babies that night. After arriving to labour and delivery at the IWK, the amazing nurses and doctors where able to keep me comfortable and calm with their knowledge and equipment. They were able to stabilize my vitals enough for me to be admitted to the maternity ward on strict bed rest.

Premature baby

Alexander at three days’s old

During my three weeks of bed rest, I was “alone” as my husband had to return to P.E.I. to work. The nurses and doctors couldn’t do enough for me, something as little as getting me a drink, an extra blanket, or even just a short conversation to pass time. Without the kindness of the staff at the IWK I don’t think my period of bed rest would have been as pleasant as it was. I never really felt “alone”.

Part of my stay consisted of ultrasounds every Monday, Wednesday and Friday to keep an eye on the babies’ development. The first ultrasound determined that baby A had restricted growth (no or reversed blood flow from the placenta through the umbilical cord) which caused him to be tiny and not grow as well as he should. The restricted growth was thought to be caused by my high blood pressure and unfortunately, there was not much that could be done but monitor the blood flow. The doctors were very informative and pointed out all the parts of the babies. They even showed me when the babies had hiccups; nothing big, but their professional bedside manner was comforting when I didn’t know what was going to happen or when. We took things day by day, and every day they were growing on the inside I felt better about what was to come.

Premature baby in incubator

Porter at three day’s old.

The day my life changed forever was the day my precious angels came into this world at 31 weeks. The day started out normal. I went for my usual ultrasound but they discovered a reverse flow of blood going back through baby A’s cord so, then and there, the doctor decided it was time to meet these little boys. Baby A, my little Alexander, was born first, weighing 2lbs 4oz, and two minutes later his brother, Porter, was born, weighing 3lbs 3oz. Unfortunately my husband did not make it over to the IWK in time to witness the boys being born, but I never felt alone as the nurses were always there to update me on what was happening and even take some pictures of the teeny tiny babies.

Even with the boys being born so small and so early, they were troopers, and had very few health problems. Premature babies often have lung issues, so when I got to see my little angels for the first time I was not surprised to see them with a CPAP machine hooked up. The little mask covering their noses was forcing room air into their lungs to clean them out and get the lungs working strongly. Within 24 hours of their birth, the boys had a drug called BLES (bovine lipid extract surfactant) put down into their lungs – which in my opinion is the miracle drug. Within 12-24 hours, the CPAP was gone and the boys just had nasal prongs to give them air until they were strong enough to breathe on their own. Eight days after Alex and Porter were born they were strong enough to be sent home to our local hospital.

The fantastic doctors and nurses at the IWK were fast acting, attentive, knowledgeable and caring. Without them and their state-of-the-art equipment, the outcome could have been much different and my healthy happy sons might not be with us today.

Twin boys

Alex & Porter, 7 months old.

The IWK will always hold a special place in my heart, especially now that I had a personal experience. I realize how important it is to have this facility in our region. Through my work, we are now raising money through a raffle for a trip for two. Proceeds will go to the IWK Foundation and the Janeway Foundation in Newfoundland. We also do weekly “dress down” days.

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Pregnancy was a very difficult time for me.

Reproductive Mental Health is just one way the IWK Health Centre supports women’s health. This service helps women with mental health concerns while they are under reproductive care—before, during, or following a pregnancy. This past weekend, women showed their support by participating in the Shoppers Drug Mart Run for Women, and were able to raise a remarkable $12,000 to support the Reproductive Mental Health Services at the IWK. Here is one patient’s story about how the IWK helped her though her difficult time.  

IWK FoundationI was about four months pregnant with our second child when I ended up at the IWK Mental Health Reproductive Center. I was sent to a social worker at the IWK Health Centre, and I credit her for helping me get to where I am today.

My boyfriend and I have had a rocky relationship and one day I showed up for my appointment at the perinatal centre in a crying mess because we had yet another bad fight. I was immediately referred to the Mental Health Reproductive Center because I literally felt out of control – a complete emotional wreck. Pregnancy was a very difficult time for me. I have always struggled with low self-esteem, emotional irregularity, and childhood issues. I have spent over 20 years talking with therapists and realized that my issues ran quite deep. I often felt overwhelmed by my list of issues and what was required to “correct” them. I felt like I was the only mother going through this and while it was supposed to be the happiest time of my life, I felt alone and overwhelmed.

My obstetrician explained that some women experience postpartum depression while other’s can experience it during the pregnancy itself. I was one of the later. I literally would feel hormones surge through my body and I didn’t know what to do. I needed help badly and I wanted to be a positive role model for my children, so I had to address my problems head on and get the help, advice, and support in order to do so.

The Mental Health Reproductive Centre at the IWK provides therapy and support to expectant mothers and will continue to do so up to a year following their child’s birth. I stayed on for two years, because I had a substantial history of a personality disorder with emotional highs and lows. My social worker was determined to see this through for me. She didn’t give up on me when she could have easily sent me on my way. I have the utmost respect for the IWK and their services as they followed through with every single physical and emotional issue that I ever raised to them.

– Tara

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I wanted to do more.

Andrew Paris, Administrative Assistant at the IWK Health Centre Foundation

Andrew Paris, Administrative Assistant at the IWK Health Centre Foundation

The IWK Health Centre has always been very special me and now I’m  truly blessed to now be working for the IWK Health Centre Foundation. My connection to the Health Centre and IWK Foundation started when I was no taller than the desk I’m at right now.

I’m originally from Summerside, Prince Edward Island and began watching the IWK Telethon when I was three years old with my mother. We always made sure to make a donation every year. As I grew up and began going to school, there was always a kid in the school who, for one reason or another, used the Health Centre. I even grew up with a few people who wouldn’t be around today if it wasn’t for that great facility. For this reason and my love for watching the Telethon, I began fundraising for the IWK when I was eight. I, my friends and family would have bake sales, yard sales, bottle drives and all kinds of different things to raise money for the IWK. We all had a great time with every fundraiser that we put on, but I wanted to do more.

When I was eleven, I said that I one day want to answer telephones for the Telethon. Well, in 2004, my dream came true. I got to answer telephones during the first shift on Saturday night. I was in awe! The atmosphere was amazing! I got to meet Steve Murphy and Bill Carr, just to name a few. There was nothing that could wipe that smile off my face! I’ve volunteered at almost every Telethon since. But, after the Telethon 28 in 2012, I wanted to do more.

Soon after that night I sent out a Tweet mentioning how much I enjoyed myself at Telethon and let the Foundation know that if they needed help, I’m available. A few hours later, a Foundation staff member replied asking for my contact information. I knew this was my in! I was so excited that I absolutely inundated her with Tweets and emails about how excited I was to possibly help with Telethon 29. I swear she gave me the Telethon’s chair information just to keep me quiet. Next thing I knew, I was on the Telethon operations committee for Halifax. I was in charge of the hundreds of Telethon phone operators and captains. I was very nervous at first, but Telethon 29 was an enormous success. Everything went great with the phone operators and captains. As the Telethon was wrapping up I realized, I wanted to do more.

A couple of days after Telethon 29, there was a job opening at the Foundation and I said to myself: “The only thing better than working with the operations committee for three months of the year, would be working with the Foundation for 365 days of the year.”

I applied for the job and a nerve-wracking 4 weeks later, I got it! My wife and two kids have had to go to the hospital on multiple occasions. I love the IWK and the Foundation so much! Working here every day is great! I go home every evening with a smile on my face knowing that I did my own little part towards making the IWK Health Centre the best it can be. I’m currently an Administrative Assistant with the Foundation, but who knows, maybe down the road, I’ll get to do more.

Get involved with the IWK Health Centre Foundation.

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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.


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!

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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.