Tyler has a rare genetic disorder called metachromatic leukodystrophy. The condition causes the brain and nervous system to progressively lose function.
When Tyler was born, doctors told his family he wouldn’t live past six. He is now 18 years old.
For the past 12 years, Tyler’s grandmother, Julie, has been his full-time guardian and caregiver.
“In my capacity I must hold down a full-time job, be his advocate, his caregiver, his support, even with his doctors. I fight for him to get what he needs. He is my purpose in life.”
But at Family Retreat, Julie doesn’t have to fight to get what Tyler needs. She said,
“Everyone is so loving and helpful at Retreat. They love on Tyler and don’t just leave it up to the Joni and Friends staff to serve the families.”
Julie and Tyler were introduced to Joni and Friends by a physical therapist. Admittedly Julie was very leery at first because so many programs and people make promises, but never really follow through.
Julie and Tyler finally decided to attend Family Retreat in 2015. Since then, they have been repeat guests at Retreat, and part of the Joni and Friends family. Some of their extended-family members have even volunteered with Joni and Friends as a way to give back.
Julie sees a big difference in Tyler at Retreat. He loves being around people and being included in everything – especially activities like riding horses, zip-lining, and the waterslide.
Tyler especially enjoys when people come up to him and recognize and talk to him. He doesn’t always get that outside of Retreat.
Tyler leaves Family Retreat refreshed, and so does Julie.
“I’m sometimes the loud voice to create awareness, especially when I need help. Taking care of myself is not a luxury I get. But at Retreat I get to socialize, have a cup of tea, and laugh. I can let the walls down and take off the mask I wear most days as a caregiver. You don’t get to let the walls down with just anyone. I can be authentic at Family Retreat because they get me. Knowing Tyler is taken care of and happy gives me peace, refreshment, respite and time to spend with the Lord one-on-one and be grateful.”
“A generous person will prosper, whoever refreshes others will be refreshed.”
Joni and Friends New Mexico serves community members living with disability. Beyond Family Retreat, Joni and Friends cares for families and weaves them into the Body of Christ through connections with local churches.