Spirit of Giving

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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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Generosity Rocks!

Thank You Bedford Masonic Lodge 104 and the Masonic Foundation of Nova Scotia!

This past weekend was a busy one for the IWK and the IWK Foundation, but only one event brought the crowd to their (dancing) feet. The Bedford Masonic Lodge 104 held Free Bird, a rockin’ benefit concert in support of Mental Health Awareness, at the Lower Deck Bar & Grill on May 26. This event benefited several mental health organizations, including the IWK Health Centre.

The incredible generosity of the Masonic Lodge did not stop there; the Masonic Foundation of Nova Scotia recently announced they will be donating $10,000 to mental health care at the IWK! Their donation will go a very long way to changing lives through excellence in care.

Events like Free Bird not only raise much-needed funds, they also bring our community together to create an open dialogue on mental health. This is a conversation that must keep going! One of the Health Centre’s goals is to remove the stigma that exists around mental illness, and the more we all talk about it and share our experiences, the faster we will move toward positive change.

The crowd at Free Bird was treated to concerts by local bands who played everything  from rock to swing-influenced tunes. Bands included: Loose Ends, Swingology, Remedy, Memphis Nights, and The Take It Easy Band. A silent auction and 50/50 draws rounded out the event perfectly.

We are so grateful to the Bedford Masonic Lodge 104 and the Masonic Foundation of Nova Scotia for their generosity and for including us as a beneficiary of this unique event – and to the community as a whole for attending and supporting this very important cause.  Your contribution will surely change lives; together, we really can make a difference.


Swingology had people up and dancing the night away!

Loose Ends at Free Bird

Loose Ends rocking the stage!

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Happy Birthday Izaak Walton Killam!

Today the IWK Health Centre Foundation celebrated the 127th Birthday of Izaak Walton Killam, the namesake of the IWK Health Centre.

The party was held in the Goldbloom Pavilion at the IWK, where we enjoyed cake, ice cream and punch to celebrate the remarkable man who made a huge contribution to our children’s hospital.

Born July 23, 1885, Izaak Walton Killam comes from a family of merchants and ship owners in Yarmouth, Nova Scotia. Although he had limited formal education, his intense entrepreneurial drive combined with his talent for business, is what allowed him to flourish and gain his reputation of being one of the richest men in Canada at the time of his sudden death in 1955.

Survived by his beloved wife Dorothy, she created a Will that expressed plans that she and Izaak frequently discussed. When Dorothy passed away in 1956, $8 million was donated to open the Izaak Walton Killam Hospital for Children in Halifax, at the request of Dorothy’s Will.

This generous donation has played a significant role in the IWK Health Centre’s reputation of being a world-class care facility.

Thank you to everyone who came out to celebrate this special day with us.

Make a gift to the IWK Health Centre Foundation.

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You make me better.

When you donate to the IWK Health Centre Foundation, your gift changes the lives of Maritime women, children, youth and families who require specialized care services at the IWK. In our 2012 Gratitude Report you will see how, together, we are making the IWK better. 

“I love the IWK. It’s such an amazing place to be – everyone is so caring and helpful. If I had to get sick, I’m glad that it’s theIWK where I had to go to get better.” – Rebecca Boyd

Rebecca Boyd

Rebecca Boyd began experiencing excruciating pains in her back and stomach in May 2012. The 14-year-old was diagnosed with an inflammatory kidney disorder called Nephritis – a condition that usually regulates itself. Only two days after receiving the diagnosis her condition rapidly deteriorated. Rebecca was admitted and found to have a more serious type of Nephritis that requires extensive ongoing treatment. As Rebecca’s care team worked to make her better, the IWK became her home away from home.

Today, her treatment includes inflammation reducing steroids and an immunosuppressant medication. Her family is hopeful that Rebecca’s condition will improve over the next two years. During that time, she will make regular visits to the IWK – a place that has already become an important part of her life.

Thank you for being champions for the IWK – as we advance health care into the next decade, we need your continued enthusiasm and commitment more than ever.

Read more about Rebecca and other IWK stories in the 2012 Gratitude Report.

Make a gift to the IWK Health Centre Foundation.

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Feel Good Friday.

It’s Friday, which means that it’s time to share one of the very special letters that we receive at the IWK Health Centre Foundation. Today’s Feel Good Friday letter is from Jennifer.

Sophia & Audrey Moffitt

I love Feel Good Friday.  I often take a little coffee break, log onto Facebook just to read it.  I feel truly blessed to have the IWK as we are currently on generation #2 of receiving IWK care.  I was followed for years through the respiratory clinic and Dr. Hughes.  Having asthma my whole life, I spent a lot of time at the IWK particularly the year I turned 10 and had a severe attack where one lung collapsed and the other filled with mucus – blue lips, blue fingers.  The IWK got me back on my feet a few times that year and kept me going for many years after that. 

I moved to New Brunswick in my mid 20’s and got married.  My asthma was well under control as an adult.  My husband and I had our first child and quickly discovered she was not fighting off colds and infection like a normal child.  Around the age of two, she was diagnosed asthmatic.  Right around that time we had our second child.  Baby #1, Audrey, began seeing Dr. Hughes at the IWK – the same doctor that treated me all those years ago.  Although Audrey’s asthma seemed to improve with the right medication, she continued to be ill and we noticed that her energy levels were not normal.  Our family doctor sent her for blood work and her Celiac test came back positive.  So, off to the IWK for a biopsy.  Shortly thereafter we received a phone call from Dr. Rashid in gastro.  He made the call to us on a Friday night at 6pm to tell us that she was in fact Celiac.  He called as soon as he could because he wanted to make sure we got the diagnosis as soon as he knew.  More appointments at the IWK for Audrey – thank goodness respiratory and gastro are just a hop, skip and a jump away from one another.  And while our gluten-free adventure was unfolding, our second child was having difficulty fighting off colds and infection.  Hospitalized at 6 weeks with respiratory distress, Sophia was exhibiting all of the same signs as her sister.  At 9 months old, after having bronchilitis (or what we thought was bronchilitis) three times, we were referred to Dr. Hughes.  He now watches over our sweet Sophia as well. 
I know what it feels like to be a kid at the IWK and I know what it feels like to be a mom of kids at the IWK.  I have nothing but fond memories of my “stay” at the IWK.  I remember doctors making me laugh.  I remember a feeling of caring that was so profound that I don’t actually remember the fear that surrounded the severity of my situation.  I only learned years later about the seriousness of my hospitalizations.  As a mom, I have experienced such a depth of patience and compassion.  Having doctors and nurses and staff take the time to explain things to me in detail is so very much appreciated.  And knowing that my kids are in great hands, literally, is something that makes my job as “mom” just a little bit easier. 
Thank you for everything you do!
Jennifer Cleversey Moffitt

Thank you Jennifer for sharing your IWK story! If you have an IWK story that you’d like to share, email us at foundationmail@iwk.nshealth.ca. We’d love to hear from you!

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Feel Good Friday

Every Friday we like to share a letter that we receive from one of our families. We receive lots of letters, and take the time to read each and every one. Today’s Letter is from Emily Johnston.

Lily, 10 months old, wearing her first “Real” Pair of shoes.

Our IWK story began August 26 of 2011. Our Daughter Lily was born on June 21, 2011 with Bilateral Clubfeet, which is essentially that her feet were turned in at the ankle when she was born. We received treatment in PEI for 7 weeks after her birth, prior to being referred to the IWK. Lily was in double leg casts since she was less than 1 day old, until she was around 4 months old. She then moved into a boots and bar bracing system.

She has undergone 2 tendonotomy’s on her left foot, and 1 on her right at the IWK (where they clip her Achilles tendon, and stretch it), both of which were performed in the OR due to her being older than most babies undergoing this process. She has had some bumps along the road, with a relapse on her left side, breaking her casts from kicking so much, and blisters on her feet from her brace, but she is well on her way to walking any day now, at 11 months old, thanks to the Orthopedic Team at the IWK.

We have made about a dozen trips to the IWK for treatments for Lily since August.  It is about a 4 hour drive each way, but we are so happy with the treatment that our daughter receives in the Orthopedic clinic and that makes every minute worth the journey. All of the staff in the Orthopedic Clinic have been simply outstanding. They met us with smiles each appointment, and made us feel comfortable right away. They have shared in our laughter, tears, and are always there to answer any questions that we may have along the way. They have been great in not only treating Lily, but also with interacting with her big sister Eva, and us as well.  I tell everyone I know how amazing everyone is at the IWK, and I am so glad that we were able to bring our daughter there for treatment.

A HUGE THANK YOU to Lily’s Orthopedic team, Dr. Karl Logan,  Jennifer Muirhead, and Sharon Joyce to name a few, and to the all of the staff, residents, and volunteers of the Orthopedic Clinic, and the IWK

Thank you Emily for sharing your story with us. If you have a story that you would like to share email us at foundationmail@iwk.nshealth.ca.

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Miles to go

Anne Vaughan is a social worker with the IWK Health Centre

I have been privileged to serve many children, youth and families who come through the doors of the IWK Health Centre facing major health challenges. Some with rare, life-threatening conditions have had to fly to other centres for risky, complicated, life-saving surgeries. They have to go to Montreal, Toronto or London, Ontario; sometimes Boston, Washington, or even Calgary.

I have been with families when they are  told their child has to fly hours away from home and wait an unknown length of time to have surgical treatment; many become panicked and overwhelmed.

Often, these families have already travelled for hours, back and forth from their home communities in the Maritimes to the IWK Health Centre. They have rearranged their work and family lives. Sometimes one parent has had to live apart from the rest of the family to stay close to the young patient. And yet, they have to face yet another medical team, another surgery, a greater separation, and more expenses.

These brave, vulnerable children need their parents close to them as they face the unknown. They are often not old enough to understand what is happening and certainly not able to provide consent without their parents. Parents need to be with them to advocate and preserve their own peace of mind.

Besides the emotional difficulties, the financial burden on these families is enormous: a host of travelling and living expenses and, often, a loss of income when they cannot return to work as planned.  Sometimes there are community fundraisers to help them cope with these losses, but some feel embarrassed and guilty that they need to rely on friends and neighbours.

That’s why I am asking you to support Aeroplan’s Kid’s Horizons program that makes it possible for a parent to travel with their child for the cost of taxes only. All you have to do is donate Air Canada Aeroplan miles by going to www.aircanada.com/kids. On Wednesday, December 15 Air Canada will match every Aeroplan mile, one for one: in effect, doubling your donation.

If you could see what I see, you would understand how important this simple act of generosity can be to a parent fighting for a child’s health and wellbeing.