Heart for the Disabled

Chante and her two siblings have been coming to Family Retreat with their parents, Terry and Vicki, for 12 years. Chante has intellectual disabilities and needs around-the-clock care. She and her siblings look forward to the talent show every year and enjoy singing on stage together. Vicki, their mother, was unfortunately diagnosed with cancer a few years ago and passed away last summer. As timing would have it, Vicki had already signed them up for Family Retreat, which started just three days after she had passed away. Terry still decided to attend Family Retreat, even though it meant simultaneously planning Vicki’s funeral. As life-giving as Family Retreat was, Terry still feels completely lost without his wife, especially now that he is the single dad of an adult daughter living with disabilities.

Ariel and Euvrena met in Haiti. Ariel is a pastor now and this couple has such big hearts for helping others. After having two children, the arrival of Ariel and Euvrena’s third child, Asaph, was an unexpected blessing. He was diagnosed with Down syndrome, and though he is an outgoing ten–year-old who loves Jesus, Asaph needs constant supervision. Recently, mom Euvrena had a brain aneurysm. Miraculously she survived, but she has numerous complications, can’t attend church, and suffers from chronic pain. Last year Ariel, Sebastian, and Asaph attended Family Retreat, and Ariel finally got some respite while his kids were safe with volunteer buddies. Pastor Ariel is now caring for his wife, Asaph, and the rest of his family. 

Scott and Christina have six children – two which were adopted (sisters from Haiti), and then they adopted Josiah from Liberia, West Africa, when he was seven months old. At the time of adoption, they discovered he had cerebral palsy. By the time he was in kindergarten he was a wheelchair user and only communicated through facial expressions and sounds. When he became a teenager, he got a whole new set of medical challenges, and it was overwhelming for him and his parents. As a child, he had friends, but once his disabilities and hospital stays increased, they all seemed to fall away. Praise God that Christina, Josiah, and Scott all got to attend Family Retreat last year! At Family Retreat Josiah was free to be himself and do new things with other teens.

Guillermo has been using a wheelchair for 21 years ever since an undiagnosed condition took away his mobility. His son Lucas was diagnosed with autism and life became even more challenging. Their home only has a few wheelchair-accessible areas, so he can’t help with Lucas as much as he wants to, leaving his wife Carolann to do the heavy lifting. Guillermo was also diagnosed with trigeminal neuralgia, which causes severe chronic pain in his face. A scholarship allowed Guillermo and Carolann to attend a Marriage Getaway, but they couldn’t find overnight care for their toddler. Thankfully the Joni and Friends staff were ready and willing to take care of Lucas onsite so this sweet couple could fully participate in the Marriage Getaway. Sadly, Guillermo’s trigeminal neuralgia has worsened. Commuting between doctor appointments and Lucas’ school has become very taxing on Carolann who’s doing this all by herself.

Maryana has three children, two of whom have a disability. Maryana’s oldest is Eric, then there’s Filip who has Down syndrome and autism, and Elsie who also has both Down syndrome and autism. Maryana is from Ukraine and has lived in the U.S. for 18 years. When she discovered that in the Slavic community, 70% of children with disabilities are left unwanted in the hospital, she was prompted by God to adopt Elsie from Ukraine. She now shares the biblical perspective of people living with disabilities to Ukrainian refugee families. Maryana thankfully found respite and support at Family Retreat, but her challenges still aren’t over. It feels impossible to find after-school and summer programs that accept children with disabilities. She’s also always worn out trying to find the right caregiving and therapy programs for her children.