Because We Are Strong

You know that saying travel often?? Well, whoever read that must not have a RARE. disease more like travel RARE.ly. Jump into this minisode with Kristine as she talks about her personal disappointments with traveling and how she has managed.

"I am pretty good at managing my expectations and moving on with the universe but it's definitely harder during times like this weekend when many have a long weekend and I know Carrie and I would be doing had I not gotten sick so I guess I'm just on here today to tell all you zebras out there who are home with me living day today, you are not alone. "

The CUBE and OOLER systems are two really cool gadgets that fit over the top of your mattress and use water to control the temperature of your bed. Right now Chili is offering my audience a really great deal. When you go to Chilisleep.com/findyourrare20, you can get 20% off the CUBE all sleep systems with findyourrare20. I hope you’ll check out Chili and see why I love their products so much.

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SURPRISE. We are back again this week with a new episode of Because We Are Strong and this is definitely not one to miss. . We sat down with two amazing women who happen to not only share the same rare conditions, apartment, and blog but they are also sisters!

Connect with Em & Kate on Instagram @twobeinghealthy

Visit their website and see all the amazing resources they have over there at www.twobeinghealthy.com

Check out their youtube channel https://m.youtube.com/channel/UCWHlZrG0_YXZX-8IZvZKINg

The CUBE and OOLER systems are two really cool gadgets that fit over the top of your mattress and use water to control the temperature of your bed. Right now Chili is offering my audience a really great deal. When you go to Chilisleep.com/findyourrare20, you can get 20% off the CUBE all sleep systems with findyourrare20. I hope you’ll check out Chili and see why I love their products so much.

Support the show

We are back this week and we are chatting with Mariah. Mariah is the mother of Emma & Abby, two adorable little girls that are the only two known people in the world with their rare disease. The Gillaspie sisters share a mutation on one of their genes that causes seizures and severe developmental delays. Mariah started the non-profit Lightening and Love Foundation to raise awareness, advance scientific research, a find a cure for diseases caused from a mutation in the THAP12 gene.


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Support THAP12 >> https://findyourrare.com/collections/rare-aware-apparel/products/copy-of-greater-than-chronic-pain-t-shirt

Connect with Mariah and Lighting & Love Foundation

Foundation Website: www.lightningandlove.org

GoFundMe: gf.me/u/yqhc2k

Foundation Instagram: https://www.instagram.com/lightningandlove/

Foundation Facebook:https://www.facebook.com/lightningandlove

Introduction Video: https://www.youtube.com/watch?v=5WyVp2dTR9c

The CUBE and OOLER systems are two really cool gadgets that fit over the top of your mattress and use water to control the temperature of your bed. Right now Chili is offering my audience a really great deal. When you go to Chilisleep.com/findyourrare20, you can get 20% off the CUBE all sleep systems with findyourrare20. I hope you’ll check out Chili and see why I love their products so much.

Support the show

Hey peeps ! I am back this week and we are chatting with Brooke. Brooke is the mother of Evan, a boy born with “designer genes”. He is only a handful of people worldwide with his particular genetic condition, related to gene RPL10. Brooke is also the creator of Everyday Evan, her families blog that is striving to provide hope, Joy, Education, and prayers for families who find themself in a similar situation. I’m you host Theresa, So lets dive in 

Welcome Brooke, thank you so much for sharing your families story with us today!

While reading your blog and Evan’s story it reminded me a lot of Kristine’s story with her diagnosis. From what I read Evan has a gene mutation but because it is so rare they have no official name for it. Can you explain a little bit about Evan and his gene mutation and how you came about to getting his diagnosis?

With Evan’s rare disease - what does a typical day look like for you and your family? What extra care does he need?

Can you share for those listening to what some of the most frustrating aspects are of Evan’s condition?

How do you cope with having a child with additional needs?

Because Evan’s mutation is genetic what are the chances of you having another child like him?

Do you ever have situations with strangers where you need to educate them on Evan?

We really want to touch on Your Blog Everyday Evan - can you share a little bit about that and what you are hoping to accomplish with it?

Since starting your blog, what impact have you noticed it has made on your family as well as other rare disease-fighters?

What is next when it comes to Evan and your blog? 

Myeverydayevan.com 

We want to thank you so much for coming on and sharing Evan’s story. Often times that decision to let the world into your home is a big and difficult one. The internet and those behind keyboards aren’t always kind. Sharing your child takes true strength and if you didn’t the world would know even less about children like him. You and your family are incredibly inspiring. 

The CUBE and OOLER systems are two really cool gadgets that fit over the top of your mattress and use water to control the temperature of your bed. Right now Chili is offering my audience a really great deal. When you go to Chilisleep.com/findyourrare20, you can get 20% off the CUBE all sleep systems with findyourrare20. I hope you’ll check out Chili and see why I love their products so much.

Support the show

This week we sat down with Billy, the CEO of Billy Footwear to get his story and why he created his footwear line and what makes them so special for the rare disease community. As many people know Owen has Beckwith-Wiedemann syndrome as well as Hemihypertrophy. Hemihypertrophy is a rare disease that affects usually one side of someone’s body making it larger than the other which can present a major problem for people trying to find appropriate footwear. Billy has created a brand that provides fashionable and accessible shoes for all ages, making his brand the front runner for the rare disease and chronic illness community.

To grab your pair of Billy Footwear shoes head over to https://billyfootwear.com

The CUBE and OOLER systems are two really cool gadgets that fit over the top of your mattress and use water to control the temperature of your bed. Right now Chili is offering my audience a really great deal. When you go to Chilisleep.com/findyourrare20, you can get 20% off the CUBE all sleep systems with findyourrare20. I hope you’ll check out Chili and see why I love their products so much.

Support the show

September is childhood cancer awareness month, where we recognize the strongest cancer fighters there is. This week we sat down with Amber. The mother of Vivian. A 3 and a half-year-old BWS warrior and cancer fighter who is currently fighting stage 4 Wilms Tumor. She shares her story of managing cancer during COVID and the frustrations as well as the blessings that come along with it. 

The CUBE and OOLER systems are two really cool gadgets that fit over the top of your mattress and use water to control the temperature of your bed. Right now Chili is offering my audience a really great deal. When you go to Chilisleep.com/findyourrare20, you can get 20% off the CUBE all sleep systems with findyourrare20. I hope you’ll check out Chili and see why I love their products so much.

Support the show

A day we will never forget through the eyes of my 6th-grade self. The world has been in a constant state of turmoil, and we sometimes forget the lasting impact it can have on children. Opening up the books I made for September 11 brought me right back to the classroom I was in when it happened. Reflecting on this day and remembering the effects it had on me is crucial to remember how events such as 9/11 or events in our own daily life with a rare diseases can affect the little ones around us. Continue to acknowledge the effects and open up the conversation. Keep the conversation alive, so we always remember and continue never to forget, because we are strong.

The CUBE and OOLER systems are two really cool gadgets that fit over the top of your mattress and use water to control the temperature of your bed. Right now Chili is offering my audience a really great deal. When you go to Chilisleep.com/findyourrare20, you can get 20% off the CUBE all sleep systems with findyourrare20. I hope you’ll check out Chili and see why I love their products so much.

Support the show

This one might be a little difficult for me. As much as I put my family out there it doesn’t make sharing my story any less difficult. My story isn’t tragic. It’s not depressing. It actually is quite the opposite. Don’t get me wrong there are hard times, there’s a struggle, and loads of stress and uncertainties   But among all the bullshit there are more blessings than I can count. I’ll be honest Rare disease never crossed my mind. Until it decided to stake a claim in my home and live there forever without being polite enough to ask for permission. That’s the thing though right? You don’t get a say with a rare disease. You don’t get to choose. But maybe that’s a good thing. Because if I got to choose beforehand I wouldn’t have one of the biggest blessings God has ever given me. This was a choice I’m grateful I didn’t get to make. Two and a half years ago our lives changed forever. I gave birth to Owen. My 12 pound chunky as all hell blessing. A boy whose life flipped ours upside down. Owen was born with Beckwith Wiedemann syndrome a disease I knew nothing about and had never heard, along with pretty much the rest of the world. Many of you here are Beckwith families who I am incredibly thankful for. But for the ones here that aren’t, I’ll give you a quick rundown of what bws is. Let me add my famous disclaimer. I am not a doctor but a mother on a mission. A mission to learn as much as I can about my son's disease, raise awareness in the process, and connect with anyone I can. BWS is an overgrowth disorder that affects Owens rate of growth. Hence why I gave birth to a toddler! One of the risks of BWS is an increased risk of developing childhood cancer. and as September is childhood cancer awareness month it seems pretty fitting to share Owens's story. Owen is screened with abdominal ultrasounds and bloodwork every three months. There’s a lot of other aspects of this syndrome that affect Owen but for myself, this one is the hardest. This is the one that constantly has bws mothers on the edge of our seats. Some of us manage this unknown aspect better than others. For myself, I go in waves. Sometimes I am doing fine and then other times I really struggle. You go from having a clean cancer scan and being on top of the world to a feeling in the pit of your stomach I can’t quite put into words. It’s a constant roller coaster of emotions. Not to mention the stress the scans bring. We try and make them as fun as we can but Owen hates the bloodwork. He fights like hell and begs me to rescue him. Nothing hurts your heart more as a mother than hearing your child beg you to help him while your the one helping to hold him down. That’s a trauma that sticks with you as a mother. 

The CUBE and OOLER systems are two really cool gadgets that fit over the top of your mattress and use water to control the temperature of your bed. Right now Chili is offering my audience a really great deal. When you go to Chilisleep.com/findyourrare20, you can get 20% off the CUBE all sleep systems with findyourrare20. I hope you’ll check out Chili and see why I love their products so much.

Support the show

This week we are throwing it back to our very first episode we did via video with Angelia over a year ago! . Angelia is a BWS (Beckwith-Wiedemann syndrome ) mother who shares her unique struggles with her daughter. Her daughter does not show the more obvious BWS signs which can cause many children to go undiagnosed. Angelia hopes her story and experience can help other mothers find courage and strength to fearlessly advocate for their children every day.

The CUBE and OOLER systems are two really cool gadgets that fit over the top of your mattress and use water to control the temperature of your bed. Right now Chili is offering my audience a really great deal. When you go to Chilisleep.com/findyourrare20, you can get 20% off the CUBE all sleep systems with findyourrare20. I hope you’ll check out Chili and see why I love their products so much.

Support the show