In Buda, Texas, the Alaniz family navigates the profound challenges of raising their 19-month-old son, Elijah Alaniz, who was born with Joubert syndrome. This rare genetic disorder affects fetal brain development and results in difficulties with muscle control, breathing, and eye movement. The condition significantly impacts daily life, demanding extensive medical care and support.
Elijah’s parents, Isiah and Adriana Alaniz, face considerable financial strain as they manage his health needs alongside those of their 4-year-old daughter, Aubrey, who has been diagnosed with autism. The family’s situation has been exacerbated by the high costs associated with Elijah’s medical care, which includes frequent hospital visits and daily in-home therapy sessions.
“We had everything established, our house, two cars, we didn’t really financially struggle,” Adriana, 30, explained. “But then we had him and things just took a different turn and started piling up.” The family’s financial difficulties intensified when they were unable to qualify for Medicaid, primarily due to Adriana’s income as a registered nurse being just above the program’s earning limit. As a result, they have been forced to cover all of Elijah’s medical expenses out of pocket.
Elijah’s care requires constant attention. Isiah, 30, left his job as a salesman to provide necessary support for Elijah’s therapies, which require a parent to be present for every appointment. The family’s daily routine includes managing Elijah’s feeding tube, which he relies on five times a day. Finding childcare has proven challenging due to the specialized care Elijah needs.
Despite the difficulties, the Alaniz home exudes warmth. As Aubrey proudly showcases her Play-Doh creations, Elijah watches with delight from his standing machine. The family’s resilience shines through their struggles, but they also share a deep concern about their financial future.
“There’s a lot of things we worry about financially that I wish I didn’t have to worry about,” Adriana noted. “Any financial assistance and help from the community would just make things easier.”
In an effort to alleviate some of their financial burdens, the family has turned to Season For Caring, a community initiative aimed at providing support to families in need. They have created a wish list of items that could significantly aid in Elijah’s care, which includes a mobility chair, adaptive seating system, and sensory toys.
The Alaniz family also seeks assistance for Aubrey, hoping for summer camp opportunities and classes that promote social interaction. Their list extends to practical needs such as child care funding, a family membership at the local YMCA, and even car tires.
The organization Any Baby Can, based in Austin, Texas, partners with families like the Alanizes to help them build stability and unlock their children’s full potential. The Alaniz family was nominated for support through this initiative, highlighting their urgent need for assistance.
As Isiah reflects on their day-to-day challenges, he emphasizes the importance of teamwork in managing Elijah’s care. “Sometimes it definitely takes two people,” he said. “I’m running around at the doctor’s office with the pump trying to feed him and she’s trying to keep the doctors calmed down because they’re trying to put all these taps on him.”
The support from the community could make a significant difference in the Alaniz family’s life, allowing them to focus more on their children’s well-being rather than financial worries. As they continue to face the challenges of Elijah’s condition, they remain hopeful for a brighter future with the help of local initiatives and the generosity of others.