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In the whirlwind of life’s challenges, finding support and connection can be a beacon of light, especially when navigating the complexities of raising a medically complex child while juggling the demands of a small business. Courtney, mother of Oliver and a small business owner, found herself in this very situation, seeking guidance and connection amidst the chaos.

Enter Sierra, mother of two young boys, working parent and small business owner and a fellow parent within the Better2gether (B2g) community, who reached out to Courtney with a gesture of understanding and support. Their initial interaction, facilitated through Carissa, B2g Resource Coordinator, sparked a connection rooted in shared experiences and a mutual desire to lend a helping hand.

Courtney recalls her first exchange with Carissa, where they discovered common ground in their respective journeys. “So, one of the many things that I texted her about,” Courtney reflects, “was how Sierra has similarities and experiences. And Carissa said I’ll connect you to Sierra.” And I was like, ‘OK, awesome, perfect.'”

Despite the geographical distance between them, Sierra’s willingness to bridge the gap and offer support resonated deeply with Courtney. “Truly, I’m not in Richmond,” Courtney shares, “so it’s hard to be a part of the B2g programs and events. It was great that she was open to connecting and sharing her experience.”

Carissa’s proactive approach extended beyond a simple email introduction; she took the initiative to connect Sierra and Courtney, understanding the demands of their busy schedules. Sierra recalls, “Carissa sent us an e-mail connecting us and then gave my phone number to Courtney. I love talking to people.”

Navigating conflicting priorities and time constraints, Sierra and Courtney persisted in their efforts to connect. “It took me a long time to get back to her,” Sierra admits, “and then we made it work eventually and we set up a Zoom call.”

Their virtual meeting, amidst Courtney’s commitments to her family and small business, exemplified the power of community and shared understanding. “I was still working at my other job,” Sierra recalls, highlighting the challenges of balancing multiple responsibilities. Despite the hurdles, Sierra’s connection with Courtney and the B2g community provided support and connection during trying times for them.

In addition to caring for her boys, Courtney wears multiple hats as she runs a Montessori-style children’s toy company called Solobo Toys https://www.solobotoys.com/, where she also designs the toys, they sell. With the company in business for about a year, Courtney is deeply passionate about their initiative to donate a portion of their sales to support initiatives benefiting neurodivergent families, reflecting her commitment to making a positive impact beyond the realm of her own family.

On the other hand, Sierra’s plate is equally full with her priority on caring for Jack and his twin plus juggling a full-time job while also spearheading Librarey https://www.librarey.com/ an online resource business. Librarey serves as a rare disease and disability resource database, allowing individuals to contribute and access a wide range of resources, including organizations, companies, movies, podcasts, articles, and products, all offered at no cost to parents and caregivers navigating similar journeys. Both Courtney and Sierra exemplify the dedication and resilience of parents who not only prioritize the well-being of their own families but also strive to make a difference in the lives of others facing similar challenges.

In the journey of parenthood, entrepreneurship, and navigating the complexities of raising medically complex children, finding kindred spirits like Courtney and Sierra can make all the difference. Through Better2gether, they found not only a supportive network but also a testament to the resilience and compassion of the human spirit. As they continue to navigate life’s twists and turns, Sierra and Courtney know that they are never alone, thanks to the bonds forged between the two of them and within the B2g community.

PROVIDE SUPPORT

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Together, we can bring about positive change

Meet Charlie – One of our Fabulous B2g Kid Champions

Almost three-year-old Charlie loves music and listening to people sing. But few things bring him more joy than when his twin sister, Addie, enters the room. “He really lights up when she’s around,” shares their mom, Antonia.

Described by his parents as a happy boy, Charlie has experienced many challenges throughout his young life.

His medical complexities include being non-verbal, experiencing mobility challenges, and requiring feeding by a G-tube. Because Antonia is still searching for a concrete diagnosis to explain Charlie’s multiple medical conditions, their family hadn’t initially connected with a community of other families walking on a similar journey.

Charlie’s parents first learned about Better2getherRVA from their pediatrician, Dr. Tiffany Kimbrough, who wanted to help connect them to local resources and support. “We’ve attended the Christmas party, the Halloween 5K Hustle, and some of the online connects,” says Antonia. “As Charlie gets older, it’s nice to know that he’ll have a community. That was one of our big pulls to Better2gether.”

Additionally, they are especially grateful to Carissa Henry, Resource Coordinator for Better2gether families. Carissa met Charlie’s family shortly after they moved from North Carolina to Virginia to live closer to family members. Carissa immediately connected Antonia with a local waiver service facilitation provider to help navigate the complicated paperwork required to support Charlie’s care. Additionally, Carissa helped identify a potential daycare for Charlie that would be able to accommodate his medical needs. “Carissa is a saint!” Antonia expresses. “Better2gether and their families are so lucky to have her.”

Antonia shared that, initially, she looked online to find support, information, and connections. However, she quickly discovered that there are so many resources and communities online, it was difficult to sift through them and not feel overwhelmed. “I learned that it’s important to seek community and seek out resources, but it’s also important to filter,” she shares. Antonia is truly appreciative of the support and understanding that she and her family gain from their experiences with Better2gether.

Thank you for your support of Better2gether and your dedication to helping children like Charlie thrive. Together, we can bring about positive change and create a lasting impact on their lives!

Donate Today

Everyone has their own unique stripes.

Show your stripes on Rare Disease Day because rare doesn’t mean being alone!   This year B2g is showing its stripes for Rare Disease Day, a day that is very important to all our B2g families and the 25-30 million Americans impacted by rare disease. In any given year, between 3-10% of all hospitalizations are related to a rare disease – in the case of children, about 70% of the time a child with a rare disease will end up being admitted into the hospital. This is why facing various challenges, including living with a rare and complex illness is always BETTER when you have the love and support of those around and the community.

Today, February 29th, is Rare Disease Day and we need your support to raise awareness. When you dine in or place a takeout order today at California Pizza Kitchen Short Pump location, be sure to mention “Better2Gether” to your server and 20% of the proceeds is donated to Better2getherRVA.

Your participation will contribute to our cause, so mark your calendars and mention Better2Gether to your server when ordering at California Pizza Kitchen Short Pump location on January 29th!

Support Rare Disease awareness and Better2gether families by joining us, making a difference, and enjoying a meal that contributes to this worthy cause.