June 24, 2013 -- When you are caring for a sick child, it is a treat to have the opportunity to forget about doctors and treatments and just have fun as a family. The Cruz family of Passaic, NJ, is one such family. Mom Sucetty recently brought her daughters twin daughters Amanda and Samantha, age 3; Alisa, age 5 and Arlet, age 7, to Valley Home Care’s annual Teddy Bear Party, a fun night out for families of children cared for through The Valley Hospital or Valley Home Care.
Twin sisters Amanda and Samantha Cruz were born prematurely at The Valley Hospital at 29 weeks gestation. Like many micro-preemies, they have had to face many challenges in their young lives. Both Amanda and Samantha were born with twin-to-twin transfusion syndrome. Amanda has been receiving care since her discharge from the hospital after birth and is globally developmentally delayed, legally blind, and has a seizure disorder. She is fed by gastrostomy tube and is on multiple medications for seizures. She is now receiving physical therapy in her home. Her twin, Samantha, was recently diagnosed with mild cerebral palsy, is also developmentally delayed and has begun attending a special education pre-school program.
The twins are not the only members of the Cruz family with health issues. Alisa has been hospitalized multiple times since she was 2 years old with a blood disorder and rheumatic fever. The girls’ mom, Sucetty, has faced multiple health issues of her own and recently had surgery, yet she continues to take great care of all four of her girls. Dad Marco works full time and the family struggles to make ends meet.
Valley Home Care’s team has helped the family deal with their children’s multiple medical issues. The expertise of the visiting nurse allows the parents to feel comfortable with the quality of Amanda’s care, which includes caring for the gastrostomy tube and medication management. Valley Home Care’s social worker has been instrumental in connecting the family to community resources. The chaplain has been able to provide spiritual and emotional support to both parents. The most delightful art therapist makes home visits to the children to encourage them to express personal issues and concerns regarding their disabilities. At each visit they work on art projects and then spend time talking.
Infants and children who have been diagnosed with life-limiting or life-threatening illnesses need special care that can be provided in their home where they can be most comfortable. Valley Home Care’s Butterflies Program provides comprehensive home care services that focus on comfort and relief of suffering for the child and support for their parents, siblings and extended family members. Because not all of these services are covered by insurance, Valley Home Care relies on additional fundraising efforts to meet the needs of their young patients and families.
The Valley Hospital Auxiliary is one organization that has supported the Butterflies Program in the past and is currently raising $500,000 (as part of its $1.5 million pledge to The Valley Hospital) to establish an endowment that will make it possible for the palliative care and hospice program for children to continue for many years to come.
For more information about Valley Home Care’s Butterflies program please call 201-291-6335. For more information about The Valley Hospital Auxiliary, or to become a member please call 201-447-8064.
Caption: Charlotte Byrne, Vice President Volunteer Services of the Valley Hospital Auxiliary, is shown with the Cruz family, one of the many families who attended “Hurray for Hollywood”, an annual event known as The Teddy Bear Party given by Valley Home Care for its young patients and their families. The party is a much- anticipated opportunity for the patient, siblings and parents to forget about doctors and treatments and just have fun as a family. Shown (left to right) are Amanda, age 3; her twin sister Samantha being held by her mother Sucetty; Auxilian Charlotte Byrne, Arlet, age 7, and Alisa, age 5.