Lumina. One brilliant light. One reason to give this holiday.
November 14, 2017
Angela and Dwayne are parents to a pair of beautiful sisters; three-year-old Hazel and one-year-old Lumina.
Before Lumina was even born, they received a diagnosis of Walker-Warburg Syndrome, a genetic disorder that affects the development of muscles, brain, and eyes.
“Most parents don’t have to face the mortality of their children,” says Dwayne. “But when we received a prenatal terminal diagnosis for our baby Lumina we were forced to face that reality, In truth, it nearly broke me. I held back from deeply loving my baby before she even came. I wanted to protect my heart from the impending ache of loss by holding back.”
Soon though, Lumina taught Dwayne that love is scary, but worth it.
“We realized that whether Lumina passed away quickly or lived a long life, we wanted her with us so we could love her, despite the risks. The joy we have, since putting our hearts on the line, has been immeasurably greater than I could have expected. Every smile, laugh, touch, and breath is such a brilliant gift. Love is scary, but man, it’s worth it. That is the lesson our Lumina taught us.”
Caring for Lumina is a 24-hour job, filled with medications and complicated equipment.
“Day-to-day life caring for Lumina is much more medical then our first child, Hazel,” explains Dwyane. “Lumina needs medication twice daily, sometimes more, and all her meals need to be provided through her G-tube, and she has seizures regularly. Those are very difficult to watch.”
Lumina’s care required a crash course in medical terms, technology, and procedures. This makes it difficult for grandparents or other relatives to care for Lumina, or even spend time alone with her. Like many families in their situation, it can be nearly impossible for Dwayne and Angela to simply take a break.
That’s where Canuck Place Children’s Hospice steps in.
“Canuck Place provides expert loving care for Lumina and our entire family,” says Dwayne. “When we stay there, we are all cared for. When we are at home and have questions regarding Lumina’s health, we can get answers 24 hours a day. Canuck Place provides a lot of peace of mind and comfort, both in the hospice and in our home.”
Dwayne, Angela, Hazel, and Lumina all stay in Canuck Place together, where Lumina receives expert clinical care, as well as pain and symptom management. While the rest of the family receives emotional support, and a well-deserved break, in a loving house where they can simply be together, as a family.
“Every dollar that donors give not only provides services for children like our Lumina, but also loving care for the entire family,” says Dwayne. “We, as recipients of that support, are indescribably grateful.”
You can support children like Lumina at Canuck Place by Lighting a Life with your donation today. Honour or celebrate someone special in your life, and share the love in your own heart.