We have officially begun registration for the Cassie & Friends Team in the 2016 Scotiabank Charity Challenge Run/Walk Event! 

To help announce our 9th year of literally stepping up for kids with rheumatic diseases and to get you excited about joining the team, we wanted to share this speech (below) made by Cassie & Friends Co-Founder, David Porte at the Scotiabank Philanthropic Advisory Forum in September 2015.

He was asked to share some of the “secrets” behind the Cassie & Friends Team’s success in raising over $650,000 for childhood rheumatic diseases, like Juvenile Arthritis, through the run event and how he got started. Here’s what he had to say:

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If you would like to help kids and families navigate the terrifying and disheartening parts of their rheumatic disease – and to find inspiration with friends – please click here to join the Casie & Friends Team using our special code “16VCASSIE“.  We will happily reimburse all kids who register for the team (with confirmation of registration). 

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TEXT OF SPEECH TO SCOTIABANK PHILANTHROPIC ADVISORY FORUM

SEPTEMBER 2015

My name is David Porte and I am a father of a child with Juvenile Arthritis. I would like to thank you all very much for coming today. I see more than a few familiar faces this morning and appreciate the support you are all showing for Juvenile Arthritis.

I was asked to talk to you today about what it is like to live with a child with a chronic disease. What it is like to live with a child with juvenile arthritis? I immediately came up with three words:

Terrifying, Disheartening and Inspiring.

I wanted to make sure that I had the right three words so I looked them up in the dictionary:

Terrifying – is defined as to cause great fear – We have that.

Disheartening – is defined as to make someone lose hope or confidence – We have had lots of that.

Inspiring – is defined as giving someone an idea, feeling or reason to do something – We have that too.

These are definitely the right words.

So, now let me tell you the story of how I got to be here today, speaking to you. It is through this story I will illustrate why terrifying, disheartening and inspiring are the right words.

In September 2006, our daughter, Cassie, was a typical 20 month old girl. Until one morning when we took her out of her crib and she wouldn’t walk. Actually, couldn’t would be a better way to put it. She basically had one leg collapsing underneath her as she tried to walk. And, as she was so young, she could not really communicate with us to tell us what was wrong. All we knew was that she couldn’t or wouldn’t walk and one knee seemed to be swollen.

We rushed her to Children’s Hospital where we started on a battery of tests. Blood tests, tests for viruses, x-rays and an MRI (which would be the first of many general anesthetics she would have). Even the staff at the hospital was unsure what was going on with Cassie.

It took two weeks but finally it was determined that this was not a virus, not a blood problem, not just something wrong with the knee but she had Juvenile Arthritis. My first thought was, how can that be, she is 2 not 102, she is too young for Arthritis.

My wife, Debbie, who is much smarter than I am, and a doctor to boot, immediately went into research mode. We were soon to learn that Juvenile Arthritis affects 3 in 1000 children and is one of the most common chronic childhood diseases. We didn’t know much then but over the last 8 years we have learned a lot more about Juvenile Arthritis.

But what we did know at the time was that Arthritis was affecting one knee. What would happen next – we didn’t know. Would it spread – no one knew. Would it get under control, go away, last forever, affect her eyes – unknown, unknown, unknown and unknown.

And this was the terrifying part. This great long list of unknowns for a little girl, at the time not quite 2. A lifetime ahead of unknowns.

Cassie soon was started with treatment of oral anti-inflammatory drugs which had the wonderful side-effect of making her throw up all the time. Ultimately, we got set up for steroid injections in her knee which we hoped would get things under control. After the injections she was put in a cast to keep the leg immobilized, keep the swelling down, reduce the pain and try and get her knee resent into the correct position.

Once the cast was cut off, we still had to put it on and use it like a splint for naps and bed time. Quite a challenge to get a cast taped on to a thrashing 2 year old a few times a day. However, once we were done with the cast it seemed she was finally on the mend.

But wham… no sooner did we get a chance to breathe when Arthritis had spread to her ankles.

Now we moved onto Disheartening. Each morning we would start the day by giving Cassie a warm bath in order to loosen up her ankles enough so she could start moving around.

A couple of months later we took a trip to Hawaii and what I remember most was carrying Cassie to the beach because her legs hurt too much to walk. I remember Cassie’s big brother, Ben, at the same age of 2 ½ running around everywhere and his favourite part of Hawaii was playing in the waves. With Cassie at 2 ½ her favourite part of Hawaii was sitting on the floor of the shower in our room a few times each day, for as long as we would let her, because it was there where she was most comfortable.

So here we were after making progress and putting her through so much trauma things were worse. At this point, we moved Cassie to stronger medications – injections of methotrexate – a drug used to fight cancer that we were injecting into her arm, at home, once week! These injections were both terrifying (for me) and disheartening, as it is so difficult to see such a little one in such distress.

Next up was to go in for more steroid injections. This time into both of her ankles and with it another general anesthetic. But no sooner did the ankles begin to improve then… wham, again, arthritis spread and she had 16 joints affected – ankles, toes, fingers and one wrist.

At this point, terrified really was where we were. Would this ever improve? Would she be able to go to school and hold a pencil? Would she be able to keep drawing and colouring (which she loved then and still does now) or would the impact on her hands be too great?

Cassie was then having blood tests every 2 months, doctor’s appointments every 3 months with rheumatology at Children’s Hospital, separate visits to her pediatrician, eye appointments every 3 months, a two hour full joint review every 6 months at the Mary Pack Clinic and injections at home once a week. We had unending trips to doctors with no idea where this was all going and where it could or would end up – Terrifying.

Just over one year after her first diagnosis, Cassie turned 3 and was starting school. She was quite swollen from the medication and was still standing and moving quite awkwardly (when she would move at all) to minimize her discomfort. With nothing working, so far, we moved to a new medication – Enbrel. Was it going to work? We didn’t know. Was it going to fail? We didn’t know.

But miracle of miracles – it worked! Cassie went from 16 joints involved down to 2 in just a few weeks. With her improvement, Cassie started changing too. She started growing and she went from tiny to nearing average size. She became more active, got involved more in ballet and gymnastics, bike riding and skiing. We started to see more of the Cassie we had known and less of the Cassie ruled by her disease.

As one of our close friends said to me, “I always thought that Cassie liked sitting and watching the other kids play but now I realize that she couldn’t play”. This statement just emphasized how disheartening a time it was.

Cassie turned 10 in January and she has improved greatly and we have managed to get off the methotrexate and are down to the one shot of Enbrel per week. Before all of this happened, I couldn’t imagine that our daughter getting down to one injection per week would be a cause for a party – but in our house it was! And have reduced the number of doctor’s visits and blood work as well. We are hopeful that we can start reducing the Enbrel this summer as she seems to have problems only in one or possibly two fingers. And, so, while the current state is not disheartening, there is still a terror in the back of our minds about what is next.

Okay, so I started out with 3 words and you must be wondering where is the inspiring in all of this. It seems only to be terrifying and disheartening – and it is both of those but, by accident and design, this journey has become inspiring.

The inspiring started in May of 2007. One night, I was online looking for a 10km run for my office staff to participate in and stumbled across a ½ marathon and 5km run occurring in June that year. The 5km was too short and there was no way I could run a ½ marathon, so I almost kept going but something about fundraising that caught my eye, so I decided to register for the run and do the 5km. I sent out an email to a few friends and family that night and thought I should be able to raise a couple of thousand dollars in the 6 or 7 weeks before the run. I put down that I would match all donations and went to bed.

The next morning there was almost $1,000 that had been pledged. Fast forward a few weeks and it was $10,000 (at which point I changed my commitment for matching donations to be the first $1000 only!) By race day $18,000 had been pledged by family, friends, staff and other business associates. I came so busy thanking people in the week before, I hardly had time to work!

On the day of the race I was the lone runner for Juvenile Arthritis but was backed up by family who all came out in the pouring rain to support Cassie and me. By the end of the race, with the help of my family and friends, the idea of creating a fund for Juvenile Arthritis was born. By December 2007, Cassie & Friends Fund for Children with Juvenile Arthritis was started. In almost three years, our Fund raised a total of nearly $300,000 of which three-fourths was gone towards funding the Ross Petty Chair for research into Juvenile Arthritis and Rheumatology.

Now, Cassie & Friends is a registered non-profit and we still do the majority of our fundraising at the Scotiabank run each year. This year, the eighth year for Cassie & Friends, we had a bigger team running for Juvenile Arthritis than just me. Cassie & Friends does more than just provide funds to support research. Through the amazing work of my wife Debbie, who manages to run a charity in the evenings, after saving lives as a Doctor during the day, Cassie & Friends provides a Parent’s fund at Children’s Hospital which parents of children with Juvenile Arthritis with immediate financial needs can draw upon, a Loan Cupboard – which is in the process of being stocked – from which parents and families can borrow equipment and resource materials. C&F also has a website for parents and families to access information. We host a Family Day annually for families with Children with JA and had over 200 attendees last year. As well, we have started an educational program for elementary schools using the Kids on the Block puppet presentations to teach children about JA.

So… Inspiring – To give someone an idea, feeling, or reason to do something.

Inspiring is seeing our daughter Cassie being so brave and so strong for one so young and watching as she sits still for blood work, her weekly injections or her multiple doctors’ appointments and then just jumps up and continues on like any other 10 year old should.

Inspiring is talking to families and hearing their tales, which are so different than ours in so many ways and yet are the same as ours, and hearing how their families and their children have overcome the obstacles that JA has put in front of them.

Inspiring is seeing our older son, Ben, get on board to raise money for C&F through a bottle drive, selling his Halloween candy, and running in the Scotiabank run on his own initiative and seeing how he looks out for his sister with such kindness and compassion and helps her in so many ways, well beyond what he should be doing at only 14.

Inspiring is watching the doctors, nurses and other staff at Children’s who are all so amazing and dedicated, working day after day to help these kids and their families.

It is these inspirational moments that have propelled our family to turn this difficult and horrible disease into something positive and to find ways to help others, in big ways and small ways, to help overcome their challenges.

So, what is it like to have a child and a family living with JA? Terrifying, yes at times. Disheartening, yes, often but also Inspiring, and, it is the inspiration that keeps us moving forward.

Thank you very much.

Vancouver, BC