A MESSAGE FROM OUR EXECUTIVE DIRECTOR
Warmer days are here and for Better2gether families, that means we will be offering more opportunities for outdoor events! The Easter Event hosted by Emma Friedlander’s Better2gether Club at Deep Run High School kicked off our in person gatherings and our families were thrilled to connect with each other! We are planning many fun and creative events to bring together the community of families with children facing rare and complex illnesses and incorporating volunteers ready to give back this Summer.
Better2gether is growing! From expanding our board of directors to offering new programs, including the relaunch of our Mentor Program, and the launch of the new Create2gether Art Program later this year. We’ll kick off summer with our 2nd Annual Better2gether Golf Classic presented by Call Federal and invite our community’s support for this important fundraising event: sponsors, players and volunteers are all welcome and needed on June 8th.
Are you ready to join the fun? Read on to learn more about ways to be involved! And thank you, our committed donors, volunteers and supporters for continuing to positively impact the lives of children with medically complex illnesses.
Executive Director, Co-Founder
Meet our Champion of the Month: Patton
Likes: pizza, French fries, video games and being outside
Dislikes: fruits, vegetables and meat
Therapies received: Feeding Therapy
United States General George Patton was known for his charismatic personality and fighting spirit. It’s probably no surprise that Better2gether’s Champion of the Month, 4-year-old Patton – a child of a local military family who was named after the famous General – shares a similar reputation.
Although young Patton was diagnosed as an infant with Cystic Fibrosis, a multi-system disease that affects the lungs, pancreas and other organs, he doesn’t let it define him. “Patton is full of life,” shares his mom, Erica. “He is full of personality and nothing gets in his way.”
Each morning, Patton starts the day with breathing treatments and chest percussion therapy to relieve mucous obstruction and reduce the risk of infection and inflammation in the airways. He ends his days with similar therapies. “He makes the most of what is in the middle,” says Erica. “We love his fighting spirit. He lives life to the fullest every single day.”
During Patton’s intensive and time-consuming daily therapies, he stays relaxed and entertained with the help of a Kindle Fire – which was given to him as part of the Better2gether Better Bag. The B2G Better Bag is provided to every Better2gether child. Each bag contains age-relevant toys and games to help keep children entertained during long treatments and frequent doctor visits.
Because Cystic Fibrosis also impacts the digestive system, Patton has a hard time digesting fats on his own. “To aid in digestion, Patton takes 4-6 digestive capsules with every meal and snack,” Erica explains. “Yes, that adds up to at least 30 capsules (of just one of his medications) a day!” Patton is described by his mom as a picky eater. “But he has proven to his parents that he can sustain on pizza, French fries and chocolate,” she laughingly shares. “Just like any 4-year-old boy, he beats to his own drum.”
Whether he’s busy playing sports or video games, Patton has two older cheerleaders by his side. His 13-year-old sister, Ashlyn, not only plays with him but helps the family care for Patton’s complex medical regimen. “She can give enzymes after snacks and meals, and can help him do his daily breathing treatments,” Erica explains. “Even with their big age gap, they have found a perfect fit. She plays a very big role in his life.”
His seven-year-old sister, Presley, also spends a lot of time with Patton. “She loves being the best friend of her younger brother…most of the time,” Erica jokingly shares. “They have a typical brother-sister relationship. They do everything together.”
As the Covid-19 pandemic raged on last year, families of children with medically complex illnesses had to be especially cautious. Patton and his family were grateful to participate in many of the outdoor, socially distanced get-togethers and events hosted by Better2gether last summer, which many families indicated were opportunities they couldn’t find elsewhere. “When ‘Covid life’ seemed to have moved on for other families, these events gave us time to interact with other medically fragile families like ours,” Erica shares.
Better2gether is excited to plan a range of additional outdoor activities this summer, so children like Patton and his family can continue to connect with other families and simply have fun!
2nd Annual Better2gether Golf Classic Presented by Call Federal Credit Union
Date: June 8, 2022
Location: Meadowbrook Country Club
Register to play as a team or an individual for an un-fore-gettable experience at Better2gether’s 2nd Annual Golf Classic presented by Call Federal on June 8!
Not a golfer? Here are some ways you can still get involved:
- Become a sponsor – Your support goes directly toward meeting the needs of children with medical complexities at the most critical times in their journey.
- Volunteer your time – Several opportunities are available to lend a helping hand throughout the event.
- Donate to the online auction – Promote your organization and contribute to a good cause by donating an item to our online silent auction. All proceeds benefit Better2gether families.
- Bid in the online auction – Win some incredible deals by participating in our online silent auction going live in May. Be sure to check the event website for updates.
Visit the tournament website at bit.ly/B2GGolfClassic for more information.
Better2gether in the News
Complex Care Clinic at Children’s Hospital of Richmond at VCU
The Complex Care Clinic at Children’s Hospital of Richmond at VCU is officially open! The Clinic is designed to serve as a medical hub for children who see five or more specialists and/or are dependent on medical technology. In addition to providing coordinated medical care, the Complex Care Clinic also recognizes the importance of offering non-medical support to children and families. Better2gether is proud to offer these services as an official partner of the Clinic.
Our goal is to offer tangible resources while families visit the Complex Care Clinic. We invite our community to help us deliver important benefits to each family seeking treatment. Listed below are ways organizations can provide concrete support:
- Toy/Game Closet – A toy, game or coloring book can provide a much-needed distraction to a child or sibling during a long doctors’ appointment or lab visit. Each child may choose one toy/game per visit.
- Medical Binder – Children with medically complex illnesses see five or more specialists, multiple outpatient therapies, can be technology dependent and more. The medical binder helps equip caregivers to manage their child’s medical needs and allow them to effectively advocate for their child’s needs.
- Food Pantry – The food pantry provides healthy snacks and drinks to families while visiting Clinic. This sponsorship stocks the food pantry for one year, allowing children much needed nutrition during long days at Clinic.
- iPad – Each child may have access to an iPad during their appointment. We are seeking to supply 4 iPads to the Clinic.
For more details and information about sponsorship opportunities, view our Complex Care Clinic Sponsor Form
Better2gether Mentor Program
No one understands the journey of caring for a medically complex child better than another parent that has walked a similar path. One of the ways that Better2getherRVA creates a community of like families is through its Mentor Program. This program offers peer-to-peer support of the shared experience of caring for a medically complex child.
Interested in learning more? Here are some frequently asked questions:
Who can participate?
A Mentor can be anyone in the Richmond area (including Better2gether families) with experience caring for a medically complex child. Mentees are limited to Better2gether family caregivers.
What are the application and program dates?
Applications for the Mentor Program are open from May 1 through May 20. After this time, pairings between the Mentors and Mentees with be made, and the first session will run from July through December.
Where will mentorship pairs meet?
It is up to the mentor and mentee to decide the location of meetings (virtual, phone, in-person, etc.) over the course of the 6-month session.
How often will mentorship pairs meet?
There is no requirement. It is up to the mentor and mentee to decide the frequency of meetings over the course of the 6-month session.
If you’d like to learn more about becoming a Mentor or a Mentee, please contact Better2gether’s Resource Coordinator, Carissa Russo at firstname.lastname@example.org.
Backpack and Tote Bag Amazon Wish List
When a family joins Better2gether, the child receives a Better Bag consisting of games, toys, books, a Kindle Fire and water bottle. The parents receive a tote bag with a medical binder, a water bottle, insulated lunch tote and items needed for long days away from home.
Created with the purpose to help parents be prepared for unexpected hospital stays or long days of appointments, and a kid-approved bag of distractions, the Better Bags and tote bags continue to provide much needed support to families.
As one parent explained, “On a typical morning for my child’s doctor’s appointment, I pack the Better2gether bookbag. I love it because I can put my binder in it for his medical papers, snacks, and toys. When I first received the backpack I was super happy to finally have something I can use for important papers instead of carrying them in my purse and losing them. Having the binder helps me stay organized for appointments, making it easy and convenient for me.”
Through experience we know being prepared and equipped for long appointments plays a significant role in the parent’s ability to advocate for their child. When a parent is confident and a child is entertained the overall well-being of the family improves, and difficult medical situations become just a little easier.
Here’s How You Can Help
PLEASE CONSIDER DONATING TODAY!
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 RVA can meet the needs of these deserving families and children.