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3rd Annual Francesco Grosso
Type 1 Diabetes Fundraiser
Cadillac Lounge, Toronto
May 5, 2012
an interview with Lia Lyons-Grosso
by Lisa McDonald
Live Music Head
The Cadillac Lounge on Queen St W is one of the coolest bars in Toronto;
a great place for friends to eat, drink and be merry,
and a fabulous place to see live entertainment.
One Sunday afternoon in April, over a delicious Lounge brunch,
compliments of Lia and Sam Grosso,
owners of this fine establishment,
I was told a story;
a story about Francesco, the Grosso’s five-year-old son.
Sitting in the booth of the front window to accommodate
the Grosso’s friends, me, relatives, Francesco,
and their other two small children,
Sutton (2 1/2), and Sammy (7 months),
I heard about Francesco’s life since being diagnosed with Type 1 diabetes,
and what his remarkable parents have been doing, to manage it.
The following interview is shared in the hope that
others struggling with this disease will identify, and be helped by it.
The interview will also talk about the event
that is happening at the Cadillac Lounge on May 5,
in support of the disease...
“Francesco Grosso’s Type 1 Diabetes Fundraiser”;
an event that will be hosted by none-other-than Vincent Pastore,
the actor known as Sal Bonpensiero (Big Pussy)
from the enormously popular HBO television mob drama,
The Sopranos.
The night of May 5th will also bring
musical entertainment by The Rattles,
a Beatles tribute band,
(who during a previous gig at the Caddy
drew a crowd out on the street when they played on the roof
just like The Fab Four did atop Abbey Road Studios in ‘69);
as well as Gordie Lewis,
founding member of Hamilton punk-rock band Teenage Head,
and vintage jazz-blues and pop songbird Tia Brazda,
who Lia simply raved about over bunch.
Sounds like the folks who plan to come out in support of such a worthy cause
are in for a real treat!
Now, let’s hear from Lia Grosso, mother of Francesco,
as to why all this great talent
will be coming together on Saturday night...
Type 1 Diabetes, also known as Juvenile Diabetes
is an autoimmune disease in which the body’s immune system
attacks and destroys the insulin-producing cells of the pancreas.
Type 1 diabetes strikes children and adults suddenly,
leaving them dependent on injected or pumped insulin for life,
and carries the constant threat of devastating complications.
While the causes of this process are not yet entirely understood,
scientists believe that both genetic factors
and environmental triggers are involved.
Living with Type 1 diabetes means living a very structured lifestyle
in order to adequately regulate blood sugar and avoid complications.
Type 1 diabetes is the leading cause of kidney failure, adult blindness,
stroke, heart disease, nerve damage, and amputation.
Warning signs and symptoms include: extreme thirst,
frequent urination, drowsiness or lethargy, increased appetite,
sudden weight loss for no reason, sudden vision changes,
sugar in urine, fruity odour on breath,
heavy or laboured breathing, stupor or unconsciousness.
These symptoms may occur suddenly.
Living with Type 1 diabetes requires approximately
1,460 needles a year (based on four injections per day)
and 2,190 finger pokes a year to test blood sugar levels.
~ JDRF (Juvenile Diabetes Research Foundation)
Before Francesco was diagnosed, did diabetes run in the family?
Sam’s mom developed Type 2 when she was an adult. And on my side of the family there’s also Type 2. But Type 2 and Type 1 are completely different. There’s no reason to think that because there’s Type 2 diabetes in your family, that there’s a higher chance a relative will develop Type 1. It came as a total surprise to us that, at the age of two and a half, our son Francesco was diagnosed with Type 1.
And how did you discover he had it?
We started seeing weight loss, but figured he was just losing baby fat, you know? It was summertime when he was running around without a shirt. I noticed his shoulder blades were sticking out, and suddenly I could see his ribs. Only a few weeks before that, his shorts were getting too small, but then they became too big. And he got a diaper rash that didn’t seem to go away, even though he was potty trained. But it was when he began drinking a lot and going to the bathroom a lot, that I realized just how not normal any of this was. We were driving to the cottage on the August long weekend. Francesco had fallen asleep in the car seat and when my cousin went to pick him up, she said, “oh my god, Francesco’s soaking wet!” From head to toe he was soaked in urine. You could squeeze his pull-up and drain a bucket out of it. I took him to the doctor. The doctor tested his pull-up with a litmus strip and saw there was sugar in his urine. We were told, “Francesco needs to go straight to the hospital right this minute.” He was diagnosed with Type 1 diabetes and got his first shot of insulin that night. Fortunately he hadn’t had the disease for too long and didn’t have to stay in the hospital, but a lot of kids become very ill before they realize what they’ve got. Like a lot of parents, I never thought that my perfectly happy, smart, healthy, normal little boy had developed diabetes. But while at Sick Kids I heard a horror story about a two-year old girl who had been losing weight too, and vomiting. The doctor had sent her home saying it was “just the flu and she’ll be over it in a couple of days”. A couple of days later she was still vomiting, and became really lethargic. Apparently the child had been drinking and urinating a lot as well, but the parents didn’t mention it and the doctor didn’t test for it, but the child died from complications of diabetes. She died from Type 1 diabetes! Children die from diabetes because they go into ketoacidosis, which is when the blood sugar runs on a sustained high for a long period of time, followed by unquenchable thirst, increased urination, and vomiting. The body attacks the stores of fat and muscle to get energy. Acetone, nail polish remover, is produced in the body, which is poisonous and causes the vomiting. Unless insulin is immediately injected into the child at that point, the child could die. And it’s important to note that Type 1 can be developed at any stage of life.
It sounds like you’ve been doing your research and staying on top of it.
It’s a lot of work, but I’ve got to be on top of it, right? If you don’t understand diabetes or why it happened in the first place, it will only be harder to cope with, and harder to manage.
Did medical professionals or staff at the hospital provide you with guidance or recommend support groups?
Sick Kids Hospital is amazing. We would’ve been so lost without them. There’s a Diabetes Clinic at Sick Kids for new parents with children diagnosed with juvenile diabetes. After Francesco was first diagnosed, we were told to be at the hospital every day from 7am until 6pm, five days straight, where the staff at the Clinic educated us on everything we needed to know. They also encouraged anybody else who would be in close contact with Francesco; grandparents, aunts, uncles, or any other childcare provider, to participate. Man, when I had to give Francesco an insulin injection for the first time, my hands shook. I was so upset! But unfortunately I didn’t have the luxury of crying, “Oh no, this is too much! I hate needles! I can’t do this!” It’s your child. A two year old can’t give themselves a needle. You have to do it. Sick Kids was also amazing with emotional support. Even three months after that, when I took Francesco in for his checkup, I got very emotional because he’d had his first diabetic seizure.
How did the seizure happen?
Francesco’s blood levels dropped really low at about three o’clock in the morning. I was at the cottage with my mom, way out in the country, and couldn’t find my phone to call 911. It was brutal. Sam wasn’t there, and Francesco was so scared. When I had last checked his blood, it wasn’t that low. What’s terrifying is that his blood had been that low before, but he never had a seizure before. So when I walked in the Clinic that day, I was crying because it felt like it didn’t matter how hard I was trying to do all the right things. I’ve since learned there will never be any guarantees. Children are sensitive. Anything can set them off and change their blood glucose levels; stress, excitement, an unexpected play day.
How has Francesco adjusted since the first few months of being diagnosed?
When we first started giving him insulin, we had to pin him down, even sit on him. He would fight us because it hurt. The easiest way was to give it to him in his bum. If I was by myself, I had to wrestle him over my lap, wrap my legs around his legs, pin his head down, and grab the skin of his bottom to inject him. It was traumatizing for him and heartbreaking for me, because not only are you giving a kid a needle, but you’re restraining him, and that’s terrifying for a child. Over time, it became easier. Eventually I could sneak up from behind Francesco while he was watching tv, and inject him without him even noticing. When we decided to put him on the insulin pump, it was another transition. The pump enables me to give him his insulin without even touching him. With the pump I can also check the average of his blood sugar level over a two-week period. We have this remote that communicates with the pump that’s attached to his body. It’s amazing.
Can Francesco do any of this himself now?
He can test his own blood now, yes. It’s very important that he becomes independent quickly, especially when it comes to going to school, which is another issue.
Yes, how does this all work when he goes to school? What kind of support does the school offer?
Many parents have problems with the TDSB (Toronto District School Board) in relation to this. It’s too much of a liability for the TDSB to administer medication to a child. But to the parent, and the child, this is not an option. The child has to have the medication. If a child doesn’t get their insulin, they could die.
The TDSB has some sort of policy on this, right? I mean, it’s not like juvenile diabetes is a new thing. Surely you are not the first.
Well, there’s a TDSB policy now for children with Type 1 diabetes that’s included in the overall policy, but only since October or November. What the policy basically states is “yes, it’s the TDSB’s responsibility to ensure the safety of the child while at school, but it really comes down to the comfort level of each individual principal and the comfort level of each individual teacher or staff member to administer medication to a child. Some schools may say, “Sure, we’ll administer medication to your child. We’ll do the blood checks”, and other schools may say, “No, you will have to come in and administer medication to your child yourself. We are not comfortable with that responsibility”. Because of this, and the stress of it all, we put Francesco in private school.
Switching schools is yet another adjustment that you’ve had to make.
When Francesco was first diagnosed he was in day care, and the day care was great. But they didn’t have to give him injections. They only had to monitor his blood and make sure it didn’t get too low or too high. When enrolled at the Montessori school, he was on the pump. We had to interview the Chair of the school to ensure their support because administering insulin with the pump is much more labour-intensive than injections are. With the pump, he needs to get insulin every single time he eats. And how can we, as working parents, run to the school to administer his insulin every time? Granted I have flexibility working for my husband’s company, but in order to administer his medication each and every time, every day, I would always have to be within five minutes driving distance of his school, at all times.
I would think it would be disruptive to the classroom too, if you were constantly dropping by.
The teacher needs support as well. I mean, how does the teacher keep an eye on him when they have twenty other kids to watch over? To make sure Francesco’s not looking too pale, too sleepy, or getting too cranky, or whatever sign may be occurring? But at the Montessori school, there’s a teacher and an assistant in the classroom; two sets of eyes at all times. And the Administrator and Chair of the Montessori school are trained and available to administer insulin if needed, as well. It’s great, but.... now our son Sutton will be going into junior kindergarten, and we can’t afford to have two kids in private school.
You want your kids to all go to the same school?
Of course. Why should Francesco, just because he has diabetes, get a potentially (depending on how you look at private schools) superior education, versus our other kids who, because they don’t have diabetes, get an education at a TDSB school? When you have kids, siblings only two years apart, they need to be together, to have as normal an upbringing as possible.
So this is something you’re still trying to figure out?
Right now I’m in the process of interviewing principals and taking tours at neighbouring schools, like Alexander Muir on Dufferin.
So you will take Francesco out of private school?
We’re keeping him in for one more year, but for grade one Francesco will go to public school where Sutton will be entering into kindergarten at the same time. Our youngest, Sammy, will also be starting day care then too.
Sammy may be too young to notice, but how has Sutton adjusted to all this?
Sometimes Sutton will say he has diabetes. Sutton is very aware of Francesco’s diabetes, and likes to pretend that he has it too. When Francesco needs his “site” changed... where the tubing from the pump goes in, Francesco will cry because it hurts. Sutton will go to him and hold his brother’s hand.
Oh my god, that is so...
heartbreaking, I know.
But it’s also very sweet.
Yes it is. It’s very sweet. Because they’re monkeys who fight, but then Sutton will do something like that. And he’s very quiet about it.
The opposite could’ve been true. Sutton could have acted out toward Francesco’s diabetes with anger and jealousy.
True. I checked Sutton’s blood yesterday because suddenly he seems to be eating ravenously. He’s also now at the same age that Francesco was when he was diagnosed.
So you’re worried Sutton will get it?
It’s not common for a kid to get diabetes because their siblings did, but it can happen. And now that one of our children has been diagnosed, I can’t help but worry. When I noticed Sutton wanting to eat every five minutes yesterday, it scared me. So I checked his blood, which was normal thankfully. And because testing diabetes has become a regular occurrence in our house, Sutton was fine with me doing it. He wasn’t scared and didn’t cry. Sammy plays with the test kit. Eventually we’ll teach Sutton and Sammy how to administer to Francesco, for added protection.
It sounds like you’re doing an amazing job. Have you joined any support groups in the community?
There doesn’t seem to be a much of a community of support groups. I think families of Type 1 are isolated due to the abundant media coverage of Type 2, which overshadows and often confuses the public on the differences between the two types. The media only seems to talk about Type 2. But JDRF (Juvenile Diabetes Research Foundation) will put you in touch with what are called “mentors”. I tried having a mentor, but you know, I don’t think it works as well to have a mentor who also has a young child with Type 1 diabetes. Because when you’re a mother with little kids, your life is crazy. And try as they might, life gets too busy to mentor others. My mentor knew I needed support, but I was too busy to call and most of the time I never heard from her. It may work better if your mentor is a parent with a Type 1 child who is now a teenager or older. There is also a “babysitting circuit” I tried, where teenagers with Type 1 babysit for parents of children with Type 1, but there didn’t seem to be enough manpower to facilitate the program. And then there’s Family Day at Sick Kids, where parents with Type 1 children can network with the same, but Family Day only happens once a year. If there were more community support groups and attention brought to Type 1 by the media, we wouldn’t feel so isolated. Francesco is the only child in his school with diabetes.
I’m not sure why, but I find this lack of solid community support really surprising.
And as a parent, you don’t want your child to be the only one, or your child to be the experiment. What you really want is someone to say, “yes, we know what to do!”
Well this chat is very educational for me. I don’t have any experience with juvenile diabetes, but I thought being there are hundreds of thousands of diabetic cases in Canada, you would not feel so isolated.
I think it’s expected there will be 300,000 juvenile diabetic cases in Canada by the year 2013. But maybe it’s me, and I just haven’t been seeking out everything I could be doing. But at the same time, I can’t complain because Sick Kids Hospital has been great in providing support. And as for JDRF, they do amazing things in terms of technology and advancements toward finding a cure. We never seem to hear about research bringing us that much closer to a cure for cancer, but with Type 1 diabetes, they’re very close. Doctors have told me that it is not unrealistic to assume a cure will be found for Type 1 diabetes in Francesco’s life time.
So tell me how the fundraisers got started?
It was only a few months after Francesco was first diagnosed that we decided we needed to do something; something to help the cause. It’s a super expensive disease to maintain. Each strip used to test Francesco’s blood costs $1. And his blood is checked anywhere between 8-16 times per day. Then there’s the expense of the pump, which is $6,000. OHIP doesn’t cover this, and Sam and I are self-employed so we don’t have any coverage at all. The Ministry of Health will assist with this expense, but only up to $600, and you have to provide a note from the doctor that states the diabetic child hasn’t had any episodes of DKA, which is diabetic kidoacidosis, the same thing as what the little girl died from that I told you about. To qualify for financial assistance, you can’t have had any more than 1 or 2 episodes of DKA in a one-year period. Francesco fortunately has never had an episode of DKA, but he could. All it would take is for him to get sick and his blood levels thrown off. We’ve been lucky, so the government covers the pump. The Ministry of Health will also cover $600 toward supplies, but do you know how fast that goes? Three boxes of insertion sets alone only lasts a couple of months, and then there’s the cartridges, and the cost of the insulin itself. The coverage does not include the insulin. Depending on what your income is, there are some options. If you are a low income family, you can apply for assistance through the Trillium program. But if your income exceeds the amount set, you’ll be ineligible. Every couple of months we’re putting another $500 on Sam’s credit card. But to get back to the event, it’s the costs associated with the disease that drove us to want to do something to help others in similar situations.
I’m sure there are many folks walking around out there who can’t afford even a fraction of these costs, and people walking around out there not aware of assistance programs either.
The fundraiser is to raise money and bring awareness to help those people, and parents like us. In our first year, we set out to raise funds specifically to help the Clinic at Sick Kids. Not the Sick Kids Foundation, which is great, but the Clinic within the hospital that directly helped our son. Our fundraising dollars are earmarked for the Sick Kids Diabetic Clinic which is allocated through the Patient Amenities Fund. This fund is set up to assist new patients, new families, who for example are coming in to the Clinic for the 5-day education program like we did, who need to feed their kids and themselves, and pay for parking when they get there. And money for diabetic supplies, and the fruit juice boxes that they may need to buy. Sam wasn’t kidding when he told you we buy fruit juice by the cases. If the social worker at Sick Kids identifies a family in need, we want them to dip into the Francesco Grosso Diabetes Fund, which is now part of the Patients Amenity Fund. All we ask for in return is to be provided with information on the families that receive the support (not the names of the families of course, as we respect issues around privacy), but what the funds were used for. We want to be able to say to Francesco, “Look honey, we raised money at the event that has helped five diabetic families get test strips and insulin just like you.”
I’m sure it makes Francesco feel good about himself.
At our first fundraiser, we raised $13,000 for Sick Kids Hospital. The second year we didn’t raise as much because we decided to fundraise for both Sick Kids and JDRF. We realized the donation process the first year was easier because all one had to do was go to the Sick Kids website and donate, and they’d get a tax receipt straight away. The second year, because we wanted to ensure the fundraising dollars were divided evenly between the two charities, but didn’t want donors to have to go to two separate websites, we set up a Pay Pal account to divide the funds ourselves. But I was pregnant with Sammy at the time and it was hectic. It seems like I’ve been either pregnant or with a new baby for these events!
(laughs) And look at you now, participating in this interview with me in the middle of a rowdy, yet joyous family brunch at the Caddy! You haven’t even had more than a bite of breakfast, which now appears stone cold.
I’m so busy! It’s what happens with moms. I’ve got used to eating cold food, or remnants left behind on my children’s plates.
So who will be receiving the fundraising dollars at this year’s event?
This year it will be JDRF. We’ve decided to rotate recipients each year. One year it will be JDRF and one year it will be Sick Kids. Keeping it simple, we hope to get more people donating on line. But for those who don’t go on line, the show admission of $30 paid at the door will go toward the cause. And if you reserve a $100 table-for-two at the show, you will receive a complimentary welcome drink, a plate of hors d'oeuvres, and a gift bag.
Will all proceeds be donated to JDRF?
This year, food is being donated to the event by Sysco, who are great and donated to the event the past two years. We’re getting t-shirts made which will be donated by The Bait Shop, a local company who did our t-shirts last year as well. We’ll be having a silent auction at the event with items donated by a local jewellery business called Made You Look. Shop Girls, a local clothing store, will be donating gift certificates, as is Pazzia Osteria Italian restaurant. Molson’s and Amsterdam are also offering support. But, we have to pay the bands. A small percentage of the proceeds will be used to pay the bands.
Sam... over to you. I have to say, not only is it way cool that you’re a huge Bruce Springsteen fan like me, but you have Vincent Pastore hosting the fundraiser and I’m an enormous fan of The Sopranos! I won’t ever forget the episode when Pussy got wacked! (laughs)
Sam: The first time I met Vincent Pastore, he hosted one of several Light of Day Foundation benefit shows we’ve held at the Cadillac Lounge. (The Light of Day Foundation raises funds to support Parkinson’s Disease). Vincent said to me, “The five families of New York must’ve kicked you out, so you could go to Toronto and open up this bar!” (laughs) Vincent loves the Cadillac Lounge! When I asked him if he’d host Francesco’s fundraiser, not only did he say yes immeditely, but he insisted on paying for his own flight in.
Video clips of Francesco courtesy of the Grosso Family and David Brown.
For more information on the entertainment that will be presented at Francesco Grosso’s 3rd Annual Type 1 Diabetes Fundraiser, please see individual links below. For more info on The Cadillac Lounge, please see link to their website below. And to support the Type 1 Diabetes cause online, please click on the JDRF website link below to donate. Thanks to everyone for your support!
The Cadillac Lounge
http://www.cadillaclounge.com/
The Juvenile Diabetes Research Foundation (JDRF) website...
http://jdrfca.donordrive.com/index.cfm?fuseaction=donorDrive.eventDetails&eventID=1268
Vincent Pastore official website...
The Rattles official website...
The story of Gordie Lewis and Teenage Head...
Tia Brazda official website...
About Lisa McDonald: Otherwise known as Live Music Head, Ms McDonald has an enormous passion for music that keeps her tapping away at a keyboard. A freelance music writer living in downtown Toronto, Lisa is currently in conversation with musicians and entertainers, publishing articles at web-based magazines. She may be contacted at: livemusichead@yahoo.com
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