Hope for Brian RAOK

I’m a Step2 Ambassador. Thank you to Step2 for donating these toys. #PlayItForward #HopeForBrian Warning: This post discusses child illness.

Hope for Brian 1photo credit: Willow Photography

You might remember my post about Brian from a few months ago. There’s not a day that goes by that his story doesn’t weigh on my heart. Last August, Brian was diagnosed with A-T (ataxia-telangiectasia), a rare genetic disease that attacks children, causing progressive loss of muscle control, immune system problems, and a high rate of cancer. According to the A-T Children’s Project, children with A-T are usually confined to wheelchairs by age 10 and often do not survive their teens. There is no known cure.

Hope For Brian 2

Lauren, Brian’s mama, wrote, “This is our new reality. Our living nightmare. Our happy, brilliant, beautiful boy who brings joy to everyone he encounters will slowly begin to progress through this disease. It’s a ticking time bomb in my head. They tell me he will lose his movement capabilities, his speech will slur, his immune system and pulmonary function will be compromised, he will be at higher risk to develop leukemia/lymphoma. My poor sweet angel doesn’t deserve this…no child does. My heart aches for him, this is pain like I’ve never imagined.”

My heart hurts for Brian, but it’s in complete shambles for Lauren and her husband. As a mother, I couldn’t fathom having to face this. They are nothing short of amazing. While attempting to raise awareness for this horrible disease, they have also made it their goal to make every moment count and to focus on the now. Lauren has made it her mission to make sure that Brian enjoys every single second of this life, despite the pain she may be feeling inside. She inspires me to be a better, more present mother.

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When Step2 offered to let me “play it forward” and do a RAOK during the holiday season, I couldn’t think of a better family! Brian loves Thomas the Tank Engine, like LOOOOOVES him. He was gifted the Step2 Thomas the Tank Engine™ Toddler Bed™ a few months ago and Step2 so kindly sent him the matching Thomas the Tank Engine™ Up & Down Roller Coaster™ and Thomas the Tank Engine™ 2-in-1 Toy Box & Art Lid™. Lauren said that Brian asked if it was his birthday or if their Elf on the Shelf or Santa brought the toys. After explaining that it was a surprise for him, he exclaimed, “Hooray for my Thomas room! This is a great surprise!” According to Brian, the toy box is actually a fort and toys should not be stored inside of it. I love it lol!

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Unfortunately, I couldn’t play Santa’s helper and be there in person because Brian and his family live on the East Coast. Thankfully, I happen to have a virtual photographer friend in the area. As soon as I shared Brian’s story with Ashley of Willow Photography, she jumped at the opportunity to take a few photos of this incredible family and drove over an hour to get to them. If you are in the Pennsylvania area, make sure to “like” Willow Photography on Facebook. She did such an amazing job capturing Brian doing just what Lauren wishes, enjoying every second of this life.

Hope for Brian 4Please consider doing a RAOK yourself and donating a few dollars to the A-T Children Project, an organization dedicated to finding a cure for A-T.

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I'm Vanessa and it's my mission in life to spread my love of hot glue guns and glitter to others. I suffer from craft ADHD, regularly working on at least 10 projects at the same time and my craft room looks like a tornado hit it. My first craft book, Party in a Jar, was published in 2014. I look forward to crafting with you!

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