Icing Smiles: Baking a Difference

Raylene Lewis: [00:00:00] Hi there, and thank you for joining us on AVM Alliance, a pediatric stroke podcast for families and friends whose lives have been affected by traumatic brain injury, brain vessel disease, or stroke. The purpose of this podcast is to focus on the kid's side of brain injury with honest Talk, News, Information, and discussion for our community. Being a parent of a medically

complex child is an extremely difficult path to suddenly find yourself on. I'm Raylene Lewis and my son Kyler suffered a hemorrhagic stroke at age 15. Thank you for joining us.

In Brain News, a new study with the University of Cincinnati is in its final stages.

The study is going to examine the effectiveness of a stroke treatment for patients with disabilities, and I'll include the link to the study in the podcast description. This study will examine the effectiveness of stroke treatment for patients with a pre-stroke disability, which is [00:01:00] one of the first studies of its kind to focus on this population.

Nearly 30% of patients who have ischemic strokes caused by a blood clot in the brain have a pre-stroke disability. The research team plans to focus on the effectiveness of a treatment called endovascular thrombectomy, E V T. Which is a minimally evasive procedure that uses a catheter to remove a blood clot from a blood vessel in the brain for ischemic stroke patients.

This treatment is known to be highly effective at reducing death and disability in two out of every five patients. With an ischemic stroke over four years, approximately 1100 patients at 12 sites across the United States will be enrolled in the study with researchers. Comparing outcomes between a subset who received the E V T and a subset who did not enrollment is protected to begin in the fall of 2023.

With me today is a spokesman from the sweetest nonprofit. I know. [00:02:00] Chelsea from Icing Smiles. Chelsea, thank you so much for joining us today.

Chelsea: Thanks for having me. We're really excited to, to be featured.

Raylene Lewis: Well, icing Smiles made a huge difference for my son after his diagnosis, so I would love for you to tell everybody about icing smiles and about the program and what all you do.

Chelsea: Sure. You know, from a personal standpoint, I've been impacted from icing smiles too, which has brought me onto the side of the organization and, and helping behind the scenes. So I love the opportunity to share. So, icing Smiles is a nonprofit organization. We cover the whole United States, and we partner medical families with local pastry chefs, bakers people with a passion for.

To provide what we call dream and specialty cakes for children with medical diagnosises and their siblings. So basically, you guys bake a lot of cakes, but y'all don't do it. You, you just put the, the [00:03:00] sugar angels in touch with the, the people who need them. Yes, exactly that. So, you know, as a nonprofit, like we, we don't, we don't bake a single cake, you know, if you think about it that way.

But through our network of 13,000 volunteers throughout the United States, we connect families locally with pastry chefs locally and bakers locally to provide these cakes for their celebrations. So tell me, what are the qualifications? If I have a child, And I would like to have them participate in the Icing Smiles program.

How does that work? .

Sure,. So we call it the The three Ts of cake eligibility. The first T is type, which goes to the child's diagnosis. The child's condition has to be considered progressive, degenerative, or malignant, or they have to require frequent or extended hospitalizations. Our second T is timing. The child must be within two years of their most recent treatment.

The patients [00:04:00] stay and they have to be under the age of 18. And then our third T is testimony, which is the child's medical team fills out the medical eligibility card. Form or one other way around that is if they've been granted a wish or acceptance into another nonprofits program, that eligibility letter will serve as eligibility for icing smiles as well.

Raylene Lewis: So if they were approved with like a Wish with Wings or another program like that, or Make A Wish is a very common wish granting organization, then that qualifies them for icing smiles as well.

Chelsea: Yes, exactly.

Raylene Lewis: So tell me a little bit about how you. How does it work? It's all a volunteer program.

Chelsea: Yeah, so we are administratively and Baker side all run by volunteers on our website, icing smiles.org.

You're able to find a application where you can go on, start the medical eligibility process and fill out your request for cake as [00:05:00] well. We serve cakes, not just for a birthday, not just for any, I mean, if you say, Today is Tuesday and we wanna celebrate Tuesday because you deserve to celebrate Tuesday.

We wanna provide a cake for that. So it was a really special part of our organization. We, we've served birthday cakes, but we've also served our anniversaries, ringing the bell ceremonies, anything along those lines. So by filling out that form, then our administrative team would be able to, Help you through the process of making sure you get the proper medical eligibility requirements, and we just ask that all of that, the paperwork side of things is filled out by one month prior to the date you need the cake.

That one month prior allows us time to find the baker, make sure the baker has availability. Allows you time to request kinda what details of that you'd like the theme and your cake to look like, as well as taking that time to pair together, you know, meeting Dropoffs, the, all the, all the details in the nitty gritty.[00:06:00]

Raylene Lewis: Well, and I have to say, our sugar angels have been amazing. When Kyler was really sick and we were having a hard time, she was like, well, you know, I can come all the way to you. I mean, just, and I was like, oh my gosh. No, no. I'll meet you halfway. Still, I mean, they're, they are so, so happy to, to help. Can you talk really briefly about the two different types of cake?

Because for us, when Kyler turned 18, we knew it was his, he, it was his last year in the program. So for Kyler, Kyle's bleed was at age. 15 and then he just turned 16 right after. And we did, so we didn't get really into the program until he was 17. So he got two cakes and he, I am telling you, it makes all the difference in the world to a kid to be thought of as that special.

And we considered doing his survival day, you know? An anniversary of his bleed and we ended up doing his birthday because they're not too far away from each other. But can you talk a little bit about, there's two different types of cakes you get. There's a regular cake, and then once in your life you get [00:07:00] a dream cake.

Chelsea: Yes. So we call them dream cakes and fun cakes. So a fun cake is defined as a rectangular cake. Or a single tiered cake, a medical child can receive one a year, excuse me. And then siblings are also able to get one fun cake throughout our program as well. And then a dream cake is gonna be that over the top.

A tiered 3D or carved cake that requires significant labor hours from a baker. And each child is allowed, like you said, one dream cake throughout our program

Raylene Lewis: for where we have our podcast, I have a video of Kyler's reveal of his dream cake. He just, oh, it just was over the top and. What impresses me so much is these bakers, they don't just go, okay, well, you know, here's the cake that I thought of for you.

I mean, they work really hard to personalize that cake and have it be like literally what that kid would dream of for whatever theme that they wanted. It's personalized to the max. [00:08:00]

Chelsea: Yeah, we, you know, this program is not just gratifying for the child. We love to say a cake is not just a cake. The impact that these make on the child, on the family, on the neighbor that came to the birthday party and saw the cake be served, you know, on the baker and their team that worked and helped behind them make the cake, the, the one cake really serves so many people and, and creates such an impact in ricochet effect on this world, which is so special to

be a part of

Raylene Lewis: it really does. Now I had a question. My, my son Kyler has two siblings and one of them is allergic to eggs. So cake is like not his thing, but the other one, we have never asked for a cake for her for anything. When the child, it has reached the age that they are no longer in the program, is that affect the sibling as.

Chelsea: Yeah. So the medical child has to be qualified for the program for the sibling to receive a cake at the [00:09:00] time, yes, totally fine. At the time we were dealing so much with my son's medical condition. I was doing good . I mean, if had icing, smiles not stepped in, there would've been no cake. , while you're dealing with a medical diagnosis, a medical situation, trauma.

The world doesn't stop. The, and I, it was a big thing that I had to face through for, through the struggles I've been through. It's like realizing that everybody on the outside is, is still going, and that life should still be celebrated by every second. So the service that icing spouses provide is a pressure that's taken off the parents as well in, in being able to, to make these moments special while.

Making something special is the last thing on your priority list. .

Raylene Lewis: It's so true. I mean, it's horrible to say it, but it is. We're just like trying to get through every day , you know? Yes. At the time. And so it was really nice to have this taken care of. You guys fundraise in order to be able to, to function and offer these for others.

Can you tell me a little bit about your fundraising program? I know one is like a [00:10:00] favorite cake or favorite baker or something.

Chelsea: Yeah, so we do a couple different, like what we call campaigns throughout the year. To, to support icing smiles. You know, we have financial needs between databases. We have reimbursement programs for our bakers.

We give stipends and places that are in the off chance that we're not able to, to secure a local baker for you to be able for you to go get a cake. Things along that that. In the end cost money. We have a donate Now button on our website. We always would happily take a donation. We do our Smile Squad, which is our reoccurring donors, people who would like to set up, instead of giving one amount now, give five, 10, $20 a month.

So you can subscribe for that also through our website. And then we do other, you know, fundraisers campaign. Throughout the year, the one you mentioned is our best cake ever campaign where bakers are able to submit the best cake they ever made. It doesn't have to be a icing, smiles cake. And then [00:11:00] whoever raises the most money, which in turn is the most votes on their cake, wins a cake decorating class with a famous baker that baker changes each year, which is a really, you know, fun, cool incentive we've had everywhere from like Sylvia Winestock to, you know, food Network stars.

We also offer a program called a Violet Bake sale. This could be done by a, a trained baker or just a family who wants to support and fundraise for icing smiles. So we design a, a website for whoever decide wants to host the bake sale to say, you know, order box one, which is three brownies and three cookies, order box.

Too, which is, you know, which allows there not to be any waste of product. Everything's pre-bought and, and pre-made. You have an order period and then a pickup date, and then all the, the transactions are happened through the website. So there's no exchange of money that HA has to happen either. So that's a fun fundraiser.

Especially, you know, we've had kids who have passions to baking and wanna join in the fun and in supporting that [00:12:00] will help set it up, so, oh, that's fabulous. Yes. When my son was Little Duff from Ace of Cakes was like his hero. So , I'm from Baltimore, so .

Raylene Lewis: Oh, ok. So when I'm not, you know, podcasting. Pediatric stroke.

I sell houses for a. I'm a real estate agent, and one time I went to convention, which I can't remember, it was like either in Las Vegas or Orlando, Florida. It was somewhere like that. And they had a big reveal where, you know, they hire a cake company, you know, to make the cake and then, but it had to be for so many people and had to be this big, big, big deal.

And then they revealed the cake at the convention and it turned out to be one of buddies. The. It was one of his television shows, you know, where, where Buddy did the shows. And so I got to meet Buddy and he signed a, a oven, MIT for me.

Yeah. Very, very sweet [00:13:00] guy. And then we got to taste his cake and it was amazing and it was all, you know, houses and it was fun.

Chelsea: His, his shop is another shop I've stood in hours lines for to, to get to go in and try. So I've been to the Hoboken one and the New York City location. So

Raylene Lewis: so cool. I mean, bakers, they're our heroes. That's just the way it is. Oh, , I love how, so do you have any other things that you want listeners to know about icing?

Chelsea: Yeah, we, we would love to, to be a part of everybody's story. You know, it's really special to us to, to add families to our network. We're about to hit Cake 30,000. Oh my so a big milestone coming up 30,000 cakes in 13 years is, is really cool and impressive the way that this program has grown and flourished and expanded.

It is an honor to us to serve every family that we. One other part of our program, and this is not something like family's request, we also [00:14:00] do have a cookie program where we periodically choose names through our database who have previously been served a case and send them a dozen hand decorated sugar cookies just as a make your day.

Some of these families, their child has passed away and we're, they get cookies and it just brings back that special moment, that special memory. And on on the same note, another part of our program is we do do memorial cakes. And so up to one year after your ch the child has. That's the cake I received.

My son passed away and I, I find it very important to, to honor him and celebrate him each year. And so for what would've been my son's first birthday, I threw a birthday party. Oh, while I'm a chef, I, I only had so much in me to be able to plan the event. I couldn't do the cake too, and so icing smile stepped up and did my son's first birthday cake.

So, you know, there's a [00:15:00] lot of different angles and ways that the organization can support. It's a, allowed me to see the impactful picture. I was a sugar angel before I ever knew I would qualify for a cake and. I said it earlier in our talk, but the fact that it impacts the baker, it impacts the family, it impacts everybody who sees or gets to be a part of the cake.

A cake is truly so much more than a cake, and we would be honored to bring on more families to our program. Well, thank you so much for sharing your story and for impacting so many lives. Because for us it, it made a world of difference. Boy, those eyes just got so bright and that smile got so big, and that's only the thing that I think smiles could provide.

Raylene Lewis: If somebody wants to sign up or to donate, what website do they go to? Where do they go to follow you guys?

Chelsea: www.icingsmiles.org is our website and links through there. You can get to our Baker application or donate now button. And then we also have all our social tags, so we're very active on [00:16:00] Facebook, Instagram, LinkedIn.

Things along those lines. So follow us, share us, and then when you receive a cake, we love to get feedback and pictures. So send those celebrations our way that we wanna, we wanna see them and share and celebrate with you.

Raylene Lewis: Oh, wonderful. Yes. And I have to tell you, I, I still, and Kyler does too, we, we love looking at the cakes and seeing other kiddos reaction and see how they're.

Chelsea: Cakes is the best medicine. That's all I can say. Yes. And we have a network of just some, you know, I think you are the one who said the word and I haven't quite shared. So we call our our baker volunteer Sugar angels. And that's truly what they are. They're donating their time, their money, their ingredients to create these masterpieces and we have

such talent that volunteers for us. So it is, I highly recommend hopping on Instagram or Facebook, looking up icing, smiles real quick and just sitting in awe and not only of the impact, but of the, the [00:17:00] talent that we have behind us in our workforce too.

Raylene Lewis: It's a fabulous feel, good use of time to see what people are doing.

All right. Well, thank you very much for joining us today. I, I appreciate you so much and thank you for sharing your story.

Chelsea: Yes, thank you for having me. We really appreciate you.

Raylene Lewis: In chapter seven, Katherine discusses the need to redefine beauty. She describes what it was like for her to realize the feeling in one side of her face was gone and her intense double vision was here to stay.

She said, it wasn't until I looked in the mirror that my new reality hit me in full force with a drooping face and an eye crossed in and. She said it was like seeing a stranger in the mirror, but she came to realize that the pursuit of superficial beauty is really about looking young forever, which is essentially immortality, which no one is going to achieve.

She believes the hyper-focus on beauty is about trying to avoid the pain of insecurity, [00:18:00] rejection, loneliness. Growing old and losing abilities, all of which are a part of everyone's humanity. True beauty, she says, is the result of intentionally seeking integration of all the parts of who someone is, body, brain, heart, and soul, and an understanding of how that reflects to each other and to God.

At this moment, we are the youngest we will ever be, but instead of focusing on what might be lost in this, We can choose to suffer strong

and grow

in the kind of wisdom and love that heals us from the inside out. Today's quote is by Helen Keller. When one door of happiness closes, another opens, but often we look so long at the closed door that we do not see the one which has been open for us.

I always like to end our time together with a motivational song recommendation. I don't play the song because of copyright [00:19:00] loss, but there have been many times on this journey where a song has really spoke out to me and helped me with my day. Today, I'm recommending you check out. Don't you worry, child by the Swedish Mafia from their 2012 single, the radio edit version.

I still remember how it all changed. My father said, don't you worry. Don't you worry child. See. Heaven has a plan for you.

And as always, if you have questions, have a topic you would like to hear about or a great song or

motivational quote,

don't be shy. Share it in the comments and let us know. And if you liked what you heard today, please go online and rate this podcast.

Remember, you're never walking this journey alone. Take care of y'all.