Brave Local Girl Plans Medical Support Group

An 11-year-old Bermudian girl with a history of bravely battling a series of medical conditions is drawing upon her unique experience in order to offer support to children and families who are coping with medical challenges of their own.

Olivia Burgess was diagnosed with a severe case of Systemic Onset Juvenile Rheumatoid Arthritis [SoJRA] at the age of three, afflicting her with chronic pain and a difficult-to-control condition that required strength and determination rarely seen in someone so young. Compounding the child’s medical difficulties was an additional diagnosis of an overlap of Systemic Lupus Erythematosus [SLE], a serious auto-immune condition, in February 2013.

Three months after the diagnosis of SLE, Olivia was flown by air ambulance to Boston Children’s Hospital following a deterioration of her aortic valve, with doctors not confident that she would survive the night. One week later, the young girl underwent a successful eight-hour open heart surgery.

Once again showing her strength and perseverance, Olivia walked the stage at Elliot Primary School for her P6 leaving school ceremony less than one month after her surgery, graduating while having maintained consistent honours throughout her time at the school.

Olivia at her Elliot Primary School P6 graduation

Traci Burgess, Olivia’s mother, said, “The next year was met with numerous other SLE challenges involving Olivia’s heart, brain, and lungs. However, we have worked through the challenges and Olivia continues to persevere.

“She has an amazing spirit and is determined to live her life to the fullest. Now, she wants to share her story and arsenal of coping mechanisms with others to provide encouragement for children dealing with their own chronic or traumatic medical challenges.”

To that end, this young Bermudian with a penchant for never giving up came up with a concept that would allow her to draw upon her unique experience in order to help others facing similar hurdles. Her concept revolved around the idea of a support group that would aim to assist not only children with medical issues, but their families and extended caregivers, as well.

Olivia said, “My mom and I have been talking about it for a while because I know there are other children in Bermuda who are going through similar challenges as me. I used to talk about the arthritis a lot with my friends in primary school, but I didn’t want to really talk with anyone after my open heart surgery last year. There was a lot happening with my body and things I didn’t have control over.”

Olivia Burgess in 2012

“It took me a while to adjust and become comfortable talking about what I had been through. I didn’t think anyone could really understand or relate, but now I know there are other children I can connect with who are surviving their own medical issues. I have a lot to share with others on how I cope with chronic illness and I can learn new skills from others as well.

“I also want to help children to learn not to be afraid, especially in an emergency. My mom wants to create an extension of the group to help provide support for parents and siblings.”

In the interest of offering a safe place for children and their families to open up about their medical challenges, Olivia took the time to build upon her original notion in order to plan a support group that offered the compassion, privacy, and safety that ailing children and their closest caregivers would require.

“We will probably meet once a month for an hour or two on a weekend,” said Olivia. “We don’t have a set meeting place yet, but I think we could meet at different places and do a variety of activities together, including group talks, guest speakers, sharing positive experiences and positive ways to deal with different situations, and planning fun stuff to do together, like art, music, animal activities, swimming, fun golf, and different types of field trips.

“It’s a safe place to share. Everything we talk about will be kept confidential and no teasing is allowed.”

Olivia in hospital preceding her open heart surgery

Olivia’s idea of offering support to others comes as a direct result of the support that she has received from her own family over the years, with her mother, father, and older brother, as well as her extended family, coming together in order to help her to manage her ailments and live her best life in the process.

Olivia continued, “I receive a lot of prayers and support from my family here in Bermuda and in the United States. Sometimes I literally just have to scream to let it all out, but I mostly like to draw and paint. I use arts and crafts to help distract me and as a form of therapy. I also read books and sometimes I write in my journal. I love spending time with animals, especially my crazy dog Shiloh.

“Sometimes I try to meditate and focus on my breathing to help control the pain, and when I’m sad or
frustrated, I talk with my family. My dad, my brother, and all of my grandparents are very supportive. I share a lot with my mom because she always keeps me focused on the positives instead of the negatives, and she doesn’t let me stay stuck in a bad place when I’m feeling down. My mom lifts me up and helps me to overcome my challenges.”

To learn more about Olivia Burgess’ support group for children and families facing medical hurdles, please call 599-3210 or email bdafamilies@gmail.com.

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