A couple of days ago, I had the opportunity to sit down with Becca, our new Special Needs Community Manager, to ask her a few questions to help introduce her to you. Over coffee at Queen Bee Coffee, we laughed and cried as we got to know one another. Meet Rebecca Walker.
Macaroni Kid MSG: Hi Becca. Thank you for taking the time to sit down with Martine and me over coffee. Let's begin with you telling us a little about your yourself and your family.
Becca: I grew up in Fayetteville, GA. I received some credentials in the medical field and worked in Pediatrics for a couple of years. I moved to North Carolina in 2014 where I met my husband within a month. We fell in love instantly and the rest is history. We had our son, Easton Maddox, January 2017. We tied the knot a few months later on April Fools Day! Easton was diagnosed with a rare, life-limiting metabolic disorder, Hunter Syndrome in November of that year, a couple of months before his first birthday. We moved to Lawrenceville, Georgia summer of 2018 to be closer to my family and we just bought our first house April of this year in a nice, country area of McDonough, Georgia.
Macaroni Kid MSG: Can you briefly walk us through your story – how you started and how you got to where you are today.
Becca: I have always loved to write. I wrote all through grade school and into college and did well. I have shared Easton's story via Facebook since day one, always asking for prayers and giving updates. I always wanted to share my thoughts, feelings, or stories on social media. A couple of months before Easton was diagnosed, I had my first real "writing gig", organizing and reviewing stories for a Prematurity Awareness magazine made by an organization that takes photos of current NICU families free of charge, Capturing Hopes. From then on, I have continued to share Easton's journey and our personal life on social media. I recently shared a piece called, "The Chair", that inspired many other special needs families and was published by a few places like The Mighty: Rare Disease, Project Alive, and Our Little Preemie. Easton's disease and our life are far from easy but if I can use our experiences and journey to help another family, it gives me a sense of accomplishment.
Macaroni Kid MSG: What do you like about being a mom?
Becca: What I like the most about being a mom is the unconditional love. The cuddles, kisses, and hugs. Kids can make a horrible day great in a matter of seconds.
Macaroni Kid MSG: How did you discover your child had a disability?
Becca: We discovered Easton had a disability/disease when he was ten months old. He had medical issues since day one at birth and they continued to pile up over the months. We continued to go to multiple specialists until one day a spine specialist who saw Easton's severe kyphoscoliosis on x-ray, wanted him tested for a disease called Mucopolysaccharidosis. It was a simple urine test that we got the results back in 2 weeks that confirmed he did and a blood test later confirmed the type being Type ll-Hunter Syndrome. Hunter Syndrome is a multi-systemic metabolic disorder where the boys (primarily seen in boys) are lacking or missing an important enzyme used to break down waste. When the waste builds up, problems arise. There is a weekly enzyme treatment Easton gets but it is only in his body 1-2 days and it does reach his brain which will cause extreme neurological decline. There is no cure and the typical life span is early teens if that. We are hopeful for Gene Therapy to come soon in order to save Easton's life.
Macaroni Kid MSG: What things have you found to enjoy about having a child with special needs?
Becca: 1. Love. There is truly no deeper love. Easton does not verbalize that he loves me but he will put his hand on my cheek and put his forehead to mine and give me butterfly kisses. 2. The strength. The saying- "You don't realize how strong you are, until being strong is your only choice." That is real. 3. The connections you make. We have made so many connections with other families, organizations, businesses, etc. Some people will truly go above and beyond for you and your family.
Macaroni Kid MSG: What are the challenges you face as a parent to a child with special needs?
Becca: Every special needs parent will probably agree that 1. R-E-S-O-U-R-C-E-S. Getting your child financial help, the therapies they need, the specialist they need, the equipment they need, it is all a struggle. 2. If your child has a rare disease, you are more than likely going to have to give a rundown on their disease to every medical professional you meet because you are probably an expert in it.
Macaroni Kid MSG: What assets do you feel you could bring to Macaroni Kid and the special needs community?
Becca: I do a lot of research and advocating. I feel I could help connect families, help provide them with the resources they need whether it be finding respite care, an organization with family events, where to get this or that, putting together some sensory or special needs friendly play dates. If I don't have an answer for something, I will do everything in my power to find it or reach out to someone who can find it.
Macaroni Kid MSG: What is it that you like about Macaroni Kid McDonough-Stockbridge-Griffin?
Becca: My favorite thing I like about MK is how involved they are in the community. They are always keeping us up to date with the latest news about events, the best places to go, and even parenting tips!
Macaroni Kid MSG: Macaroni Kid MSG is all about community. What is your favorite thing to do in our community?
Becca: My favorite thing to do in our community is to check out the parks. My son loves to swing so we are always on the hunt for a great park with swings!
Macaroni Kid MSG: When you’re not taking care of your family or working on Mac Kid, where are you most likely to be found?
Becca: Doing some self-care whether it be going shopping, getting a mani-pedi, or getting my hair done.
Macaroni Kid MSG: Let's talk favorites for a moment.
Becca: Okay, let's do it.
Macaroni Kid MSG: What's your favorite comfort food?
Becca: Carbs-but seriously! Bread, sweets, pasta, etc.
Macaroni Kid MSG: What's your favorite splurge?
Becca: I'd say toys for my son. We are always looking at toys that he can enjoy and make use of!
Macaroni Kid MSG: Where is your favorite place in the world?
Becca: My favorite place in the world that I've actually been to is Disney World on my son's wish trip- it truly was MAGICAL!
Macaroni Kid MSG: What is something that you are really proud of, Becca?
Becca: I'm really proud of my family, to be honest. We have endured so much during Easton's life and while our faith, love, and strength has been tested many times, we have managed to continue to be strong for Easton and advocate for him.
Macaroni Kid MSG: What are three things we should know about you that you have not already shared.
Becca: 1. I am a Christian. 2. I am an avid- coffee drinker. 3. I have a huge love for animals.
Macaroni Kid MSG: How can people follow you and connect with you online?
Becca: Follow my son's Facebook group to see updates and writing regarding him at TEAM #EastonIsMyHero- Fight Against MPS ll.
Macaroni Kid MSG: Is there anything else that you would like to share?
Becca: I am so excited to work alongside both of you (Stephanie and Martine) as well as help our local Special Needs Community.
"Life is short. Make as many memories as possible. Play with your children, read to them, make experiences with them.
