Sammy Ortiz, an 11-year-old patient of Stony Brook Children’s Hospital, and his family were nominated for our program by their medical social worker. At 4-years old, Sammy suffered an illness that led to encephalitis with severe neurological devastation (nonverbal) and became wheelchair-bound. The doctors informed the family that Sammy was expected to be bedbound with limited function in movement and would require total care.
Through his parents’ persistence, they have obtained the services and equipment to afford him every opportunity to progress and have meaningful movements. Some equipment was covered through their insurance, but much of his adaptable equipment was not. Committed to giving Sammy every opportunity available, his parents have taken loans to secure all items and equipment that are beneficial to his well-being and recovery.
The family relocated to a school district that has been instrumental in providing Sammy with adequate academic support to further his functional progress. Despite the odds, Sammy can walk with two people’s assistance and is able to minimally gesture with physical/facial movement. He recognizes the familiar faces of those who are frequently involved in his care. However, he still requires total care and 24/7 shift nursing as he still suffers from minor seizures throughout the day and cannot be left unsupervised.
On April 24, 2022, the family faced yet another devasting challenge. A fire destroyed their apartment unit and all of Sammy’s expensive adaptable equipment and supplies. Grievously, all family items were lost. Stony Brook Children’s Hospital’s discharge planning team has been working with supply companies and insurance companies to replace his basic supplies. However, the adaptable equipment (that the family is still paying off loans for) that has been so beneficial for Sammy’s progress unable to be replaced by the hospital. For the first time, the family found themselves without a stable home and unable to provide for their basic needs. They qualified for emergency housing, but it has limited accommodations for a family with a special needs child.
CMM Cares Support
With the help of our donors and fundraising efforts, CMM Cares has been able to offer the support need to help this family get back on their feet and relieve some of the financial burden of replacing all that was lost in the fire.
CMM Cares purchased Sammy a brand-new Sit to Stand lift, which is an assistive device for patients who do have some mobility but still need help moving from one position to the next. This piece of equipment ensures Sammy’s parents and aides can safely support and transfer him as needed. This specific piece of equipment retails for over $3,000, and without renter’s insurance at the time, Sammy’s original lift was lost in the fire.
Also lost in the ashes was Sammy’s adaptive tricycle which has proven instrumental and beneficial to his daily care. Adapted sports bicycles enable children and adolescents with physical disabilities to improve leg strength, posture, balance and range of motion. While not a medical necessity, replacing Sammy’s Rifton Adaptive Tricycle has given him back the opportunity for exercise and recreation and to experience the joy and freedom of independent movement.
Another piece of equipment that Cares purchased on behalf of the Ortiz family is a hygiene and toileting system that serves as both a as both a toilet and shower chair. The commode system is designed to improve the health and lives of clients and caretakers and because it accommodates toileting, showering and bathing, the Rifton HTS eliminates the need to buy separate equipment for each activity, making it versatile in their tight space.
In addition to replacing equipment already proved beneficial to Sammy’s care, CMM Cares fulfilled the Ortiz Family’s biggest wish, to make their new apartment feel like a home. With a small grant from Bob’s Discount Furniture Foundation, we purchased new furniture to furnish their home. The Ortiz family now has a new dining room table with chairs, new dressers, nightstands, and mattresses. We were able to go even a step further and purchase items beyond the basic necessities, such as winter coats, boots, lamps, a television, and even a new Christmas tree, giving them a renewed sense of comfort as they replace all that was lost.
A special thank you to Stony Brook Children’s Hospital for nominating and introducing us to this incredible family, to MedMart for helping source the medical equipment, to Bob’s Discount Furniture of Nesconset, and our CMM Cares Board for their support of this family. We wish the Ortiz Family the very best in the future and hope we have made a lasting impact on Sammy and his parents.
If you’re interested in helping us support this family with in-kind donations, and financial support for our plans, or if you know local businesses that may be interested in participating, please contact Victoria at vtringone@cmmcares.org.
