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Seven-year-old Kira loves to be outside! Whether she’s hiking with her family or visiting the beach, moving, swimming, and splashing are some of her favorite activities.

As a baby, Kira experienced seizures and experienced her first hospitalization at only 9 months of age. Thankfully, she has only had sporadic hospitalizations since gaining seizure control. However, Kira continues to attend frequent therapies including physical, occupational, and speech.

Kira and her family don’t let her many medical appointments slow them down. “Kira is very adventurous,” shares her mom, Olivia. “She loves new places and “daring” activities, like rollercoasters, four wheeling, and trotting when horseback riding. She is also very loving and gives excellent cuddles.”

“Even though Kira is nonverbal, she is very expressive and will let you know very clearly what she likes and doesn’t like!” mom adds.

One of the things that Kira especially loves is spending time with her younger sister, Lyla. “We didn’t know how she would feel about going from being an only child to having a baby around, but she was so gentle and sweet when we brought her baby sister home,” Olivia recalls. “She also has a very close bond with her “Savta” (grandmother) who is one of her caregivers.

Kira’s family is so grateful they learned about Better2gether when they moved to Richmond from another state. “Better2gether has given us the opportunity to connect with and build community in a new place and find out about resources for ourselves as parents, for Kira, and for our entire family,” say Stephanie and Olivia, Kira’s moms.

One program that was particularly meaningful was the Better2gether Self-Care Mental Health Retreat. “Attending the Retreat was a great way for us to connect with other parents in similar circumstances who understand our journey,” Stephanie recalls. “It enabled us to take time for ourselves to think about our own needs, which can be so difficult when our children’s needs are always the priority.”

“Kira lives a happy and fulfilling life,” Oliva shares. “She does all sorts of things that non-disabled children do — go to school, ride a bike, go camping, horseback riding, paddle boarding, and more! Just about any activity can be accessible if people are willing to make it so.”

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Beyond the Diagnosis: Bringing Visibility to Rare Disease

Check out Beyond the Diagnosis where art meets science to raise awareness and inspire research for children with rare diseases. 

Step into the captivating world of the Beyond the Diagnosis art exhibit, where the power of art intersects with the lives of children facing rare diseases. This global initiative brings attention to many of the 7,000 known rare diseases, encouraging the medical community and the public to look beyond diagnoses and see the individuals behind them.

Better2gether is proud to collaborate with the Children’s Hospital of Richmond at VCU to present a traveling exhibit of original paintings highlighting children with rare diseases. This collaboration is a special opportunity to support medically complex kids and their families.

On April 17th, we celebrated the unveiling of a stunning painting by local artist Nathalie Godin of our very own Better2gether kiddo, Jack Phillips, at the CHOR Pavilion Sky Lobby. This exhibit is a testament to our commitment at Better2gether to ensure that children facing medical complexities feel supported and empowered, and now will include the portrait of Jack and his sister Charlotte.

Through the Beyond the Diagnosis exhibit, we aim to forge connections and strengthen our community’s bond with these extraordinary children. By shining a light on their stories and struggles, we hope to foster a sense of understanding and solidarity that goes beyond words.

Better2gether Hosted MOMENTS: An Evening of Support and Celebration for Families 

We were delighted to host MOMENTS, a special parent support group session, in partnership with the Children’s Hospital of Richmond at VCU (CHOR) as part of an evening of Beyond the Diagnosis recognition and celebration on April 17th. This unique event offered educational programming and open discussions for caregivers, providing a nurturing community during challenging times while fostering bonding and understanding among families.

This event underscored Better2gether’s commitment to creating a safe and supportive environment for families navigating the journey of caring for a medically complex child. Your generous support enables us to offer these critical resources and create moments of connection and empowerment for these families.

Together, let’s show these children and their families that they are not alone. Thank you for being a part of our mission to create a supportive community for kids with rare diseases.  Together, we’re driving positive change and creating a lasting impact!  Your ongoing support makes all the difference.

Donate Today

We are thrilled to recognize our collaboration with Reveille Weekday School and the incredible impact it has had on families facing complex medical challenges. Their generous food and snack donations have been a vital source of support for the families and kids at the Complex Care Clinic at Children’s Hospital of Richmond.

These contributions have made a tangible difference in the lives of children battling serious illnesses. We extend our heartfelt thanks to Reveille Weekday School for their steadfast commitment to our cause and their ongoing dedication to helping these brave kids and their families.

As the number of patients continues to grow, Better2gether regularly replenishes the toy and snack pantry at the CCC every 4-6 weeks. Your support is crucial in ensuring these important resources are always available for the children.

You can help by shopping our Amazon Wish List for toys and snacks. Your contribution will make a meaningful difference in brightening the days of young patients and their families. Click below to shop now and support our cause. Thank you for your generosity!

SNACK PANTRY WISH LIST

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Celebrate the 3rd Annual Inclusion Day at the Diamond on May 19th!