A Message from Our Executive Director
February 28th was Rare Disease Day but Better2gether chose to raise awareness for children battling rare or complex medical illnesses all month. We celebrated these children’s strength, bravery and incredible attitudes by educating the community about rare diseases and the challenges families face caring for a child with a rare illness.
We want to thank every supporter that chose to order the Burger of the Month at Burger Bach and help raise funds for Better2gether. We appreciate the support from our community in helping families with food costs by purchasing a Kroger or Walmart gift card. We know a child’s rare disease lasts for more than one day or one month. We thank YOU for your partnership in supporting families on their journey caring for their medically complex child.
“Being a special needs parent brings challenges that a
‘normal’ or ‘typical’ family doesn’t experience. Being a special needs parent in 2020 has brought new challenges that were never anticipated. Better2gether RVA kept us going in 2020.”
– Mom of Cassius
Champion of the Month: Alex
Alex Enjoys: Riding his 4-wheelers, hunting, fishing, playing games, riding bikes, playing Xbox, and spending time with family and friends.
Alex Dislikes: Having a G-tube feeding, and not being able to eat a lot of foods due to Eosinophilic Esophagitis and significant food allergies.
Medical Appointments and Hospitalizations: Alex goes to several Pediatric Clinics, often 1 to 2 times a week. In addition, he has experienced a number of Emergency Room visits.
Therapies Received: Alex has participated in Occupational and Physical Therapy in the past.
There are so many words to describe fifteen-year-old Alex. But none of them start with his diagnoses.
Yes, he does experience a number of chronic and complex medical challenges including Cystic Fibrosis, Asthma, Eosinophilic Esophagitis, and Eczema. However, his medical diagnoses don’t define him.
Instead, he is described by his parents, Lisa and Mitri, as “strong, happy, full of energy, brave and big-hearted.”
Living with chronic and complex medical issues isn’t easy for Alex or his family. For example, Alex doesn’t sleep well, at times, due to his significant itching from eczema. He takes 50 medications. He has multiple food allergies, including some that produce anaphylaxis reactions. Due to joint swelling and pain, he has needed a wheelchair to get around, at times. His diagnosis of Cystic Fibrosis requires a complicated daily regimen of medications and breathing treatments. And he has eleven doctors who sometimes require weekly or monthly appointments.
However, “…not much slows Alex down. He is a very happy boy full of energy,” says mom, Lisa. “Alex keeps us all laughing. He is a clown at times and doesn’t complain much. Even when he isn’t feeling well, he keeps a smile on his face, we pray, and he keeps on going.”
Alex is the youngest of three siblings in the family. Lynzy, his 19-year-old sister, also has chronic medical conditions. “She is smart, kind-hearted and makes us proud every day,” shares Lisa. Lynzy is a full-time nursing student in her second year of college, and works for a home health agency caring for a patient in his home.
Myles, age 17, is also described by his family as smart and kind-hearted. A junior in high school, he loves fishing and hunting, and is learning trades like building decks and other home improvements.
“Having children with chronic illnesses affects the whole family, our daily routines, and every part of our lives,” explains Lisa. “However, as a family, we have learned to embrace each day, make sure we show our love for each other every day, and remember that every moment is precious.”
Better2gether RVA Golf Classic
presented by Call Federal Credit Union
Date: May 13, 2021
Location: The Golf Club at The Highlands
Better2gether RVA is excited to partner with Call Federal to host the Better2gether Golf Classic. This event will be successful with your support as a sponsor or player.
Why You Should Get Involved
Your sponsorship will help Better2gether provide key resource coordination such as connections with organizations providing financial relief, outpatient therapies, legal resources, and mental and emotional support.
Funding also supports our important programming such as Music Therapy, Gas and Grocery gift cards and Moments Support Group to name a few. Your sponsorship directly impacts families in RVA.
It’s Great for your Business
Your sponsorship demonstrates your commitment to our community and improving the lives of children in RVA. It allows Better2gether to promote your business to Better2gether’s social media followers, event participants, and the greater metro Richmond region through targeted marketing.
For more information on being a sponsor or registering a team, please reach out to Stephanie Becker at firstname.lastname@example.org.
Your donations allow Better2gether RVA to provide monthly group Music Therapy class.
With your support we have been able to continue this favorite program virtually throughout the pandemic, allowing children with medically complex illnesses and their siblings to engage with their friends and maintain important connections within the Better2gether RVA Family.
Screenshot of Music Therapy Class
Makayla is styling in her cozy, warm unicorn hat that she just received as a fun surprise from Gayton Baptist Church, and the timing was perfect for our recent snowy weather.
We are grateful for our new community partner–delivering needed food and various supplies to our families.
The Importance of Resource Coordination: Meet Melinda Spivey, MSW
This month, we’re shedding light on a critical but often overlooked aspect of caring for a child with a rare or complex illness: Resource Coordination.
When children are diagnosed with complex medical conditions, families typically face obstacles and challenges from every direction. All at once, parents are managing multiple medical appointments, trying to gain information about current medical advances, seeking support from other families and community organizations, meeting the needs of siblings, caring and advocating for their medically complex child, juggling work and home responsibilities, and trying to meet costly financial obligations.
Better2gether’s Resource Coordinator, Melinda Spivey, MSW, understands these challenges and is committed to making a positive difference in the lives of children and families through resource coordination.
“Especially in the beginning stages when children are newly diagnosed, parents are often overwhelmed and isolated,” Spivey explains. “They might feel uncertain as to where to turn for guidance, understanding the complexities of their child’s illness and treatment along with navigating hospital stays and clinic visits. The impact is significant and may very well affect all aspects of their lives.”
One might wonder why it’s important to provide resource coordination to families with rare or medically complex illnesses when they’re already part of a health care system. “I believe our families are fortunate to have a number of outstanding clinics and hospitals (including a brand new one under construction), along with dedicated physicians, nurses and other providers,” Spivey explains. “However, my goal is to provide our families with a continuation of care and address the needed resources in the community, while strengthening existing partnerships with the healthcare team – all in our families’ best interests.”
Spivey sees Resource Coordination for Better2gether families as having three primary components: Connections, Support and Education.
“Connecting families with other families is so meaningful,” she shares. “Although diagnoses might be different, their journeys are similar and the emotional and physical toll it takes caring for a child with a medically complex and rare disease. When parents validate one another and offer support, they feel a genuine sense of connection and knowing that they are not alone.”
Spivey also emphasizes the importance of connecting Better2gether children with others. “Medically complex children often feel sad, confused, and even different,” she shares. “When they interact during music therapy, art sessions and other recreational B2G events, children have the opportunity to relate to others who are experiencing similar emotional and health challenges. In addition, they might see children who even resemble them in some ways – like, for example, using the same medical devices.”
In terms of providing support, this is something that Spivey identifies as being of critical importance. “As Resource Coordinator, my focus is listening as parents share their concerns and other hardships while offering them comfort and encouragement,” she says. “I also work together with our families to identify their individual or family needs, discuss possible alternatives or solutions, and determine helpful resources.”
Education and raising community awareness are also key components of the Resource Coordinator’s role. “Medically complex and rare diseases require extensive and ongoing research, asking the right questions to obtain the effective treatments as well as securing the necessary funding,” Spivey shares. “Better2gether believes in sharing our families’ stories, their struggles along with their successes, and advocating for them and their children’s overall wellbeing.” Also, Spivey believes that Better2gether parents benefit from relevant presentations from local experts during the Moments Support Group, as well as through sharing of educational materials and training opportunities.
The global pandemic has forced Spivey to pivot and find new ways to evaluate families’ needs, and she is justifiably proud of how Better2gether has risen to meet these needs. From drive-through events for food, masks and cleaning supplies to online support groups, resource coordination may look different, but it’s still a priority for Spivey.
Spivey looks forward to the coming year with enthusiasm and optimism, eager to identify new opportunities to engage Better2gether families. “Once it is safe to do so, I am excited to meet children and their parents at clinic appointments and during hospital stays,” she shares. “I can hardly wait to play a game, create art, or simply chat together in hopes of bringing our children some comfort and joy. I also look forward to further strengthening my relationship with parents, and also coordinating regular social events like trips to local museums, parks and playgrounds.”
“It is truly my honor to serve in the role as Resource Coordinator for Better2gether,” Spivey says. “The families are extraordinary and inspire me with their resilience, absolute determination, and tremendous love of their children.”
An easy way to support Better2gether is to shop through Amazon Smile and select Better2gether as your charity. AmazonSmile is a simple way for you to support your favorite charitable organization every time you shop, at no cost to you. Sign in to smile.amazon.com on your desktop or mobile phone browser. Go to Your Account and select the Charity. Better2gether will be listed as an option. As a result of you shopping through Amazon Smile, Amazon will donate a to Better2gether for every purchase you make!
There are thousands of families in RVA caring for a child with a medically complex illness who have no non-medical support. Please consider donating today so Better2gether can meet the needs of these deserving families and children.
About Better2gether RVA
While support services abound in Richmond for families of children fighting well-known illnesses like cancer and juvenile diabetes, currently nothing exists for families of children battling more rare and complex illnesses. Better2gether RVA, is dedicated to the belief that all families of children battling illness — regardless of their diagnosis — deserve access to resources and support services. Since 2017, the organization has provided mentorship, counsel and recreational programming for families of children diagnosed with complex medical illnesses, plus valuable resources for treatment and its associated costs. Learn more at www.better2getherrva.org.