Camp Alohi Lani, which means ‘Bright Sky’ in Hawaiian, is an outdoor camp tailored for youth who have a parent (or grandparent in a significant role) living with ALS. The camp is a safe setting in which youth, aged 8 to 17, can come together and receive support on their ALS journey. Qualified medical and social-emotional support is available on-site to ensure that all participants are comfortable and cared for. The camp this year will be held on August 23 to 26, 2019, at Camp Jubilee in Port Moody.
The camp is a supervised environment where kids impacted by ALS can make new friends, challenge themselves, learn new skills and spend time in the great outdoors. It provides a day of respite where kids can be kids. The last day is dedicated to a Support Circle, facilitated by the ALS Centre social worker and ALS Society of BC patient services coordinator, where they talk about feelings, emotions and coping mechanisms on stress.
From our Caregivers Days, it is apparent that isolation, fatigue and anxiety are common feelings in adult ALS Caregivers, but what about the children of those fighting this disease? With responsibilities both at school and at home and worries about the future of their loved ones, children and teens need their own support when it comes to coping with the impact of having a family member with ALS.
Our founding rests on the primary proposition that fatigue and anxiety are not limited to adult caregivers; the disease also impacts children. ALS is a family disease, and each member of the family needs support.
Please help us to reach out to these children and support them in their grief journey.