Disclaimer: Names have been changed to protect the family’s privacy.
Steven, 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, Steven suffered an illness that led to encephalitis with severe neurological devastation (nonverbal) and became wheelchair-bound. The doctors informed the family that Steven 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 Steven 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 Steven with adequate academic support to further his functional progress. Despite the odds, Steven 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 Steven’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 Steven’s progress cannot be replaced by the hospital. Now for the first time, the family finds themselves without a stable home and unable to provide for their basic needs. They have applied for emergency housing, which has limited appropriate accommodations for a family with a special needs child.
Utilizing emergency services and community resources, the family has been temporarily placed in a one-bedroom ground-level apartment within the same school district. Steven’s father is employed by Suffolk County Accessible Transportation (SCAT) Services, and his mother cares for Steve full-time. Given that the family does have income, they are required to pay for their emergency living costs, so saving money for a security deposit on a permanent residence and trying to recover and replace all items lost feels like an insurmountable challenge.
HOW CMM CARES IS HELPING
With our support, we can help this family get back on their feet and relieve some of the financial burdens of replacing Steven’s medical equipment and furnishing their apartment to make it feel like home.
The below lists equipment that has already proved beneficial to Steven’s care, in addition to “wish list” items that are beyond basic needs but will help replace items lost in the fire and give them a renewed sense of comfort.
WISH LIST ITEMS
- Journey 340 Sit-to-Stand Lift
- Gait trainer XL
- Rifton Adaptive Tricycle Large (R140)
- Carousel Sliding Transfer Bench with Swivel Seat (special bath seat)
- Frame bed full
- 2 Dressers for clothes and linens
- 1 Dresser for parents
- Storage closet for care items
- Sectional sofa
- Table with the chairs
- Queen size bed frame and mattress
- TV Samsung 55”
- TV Stand
- Small kitchen appliances
- Clothes, undergarments, and shoes for Steven 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 firstname.lastname@example.org.