Patient Update: Dream Shepherd
Dream “The Dreamster”, age 11, was born with sickle cell anemia. Sickle cell disease is a hereditary blood disorder which affects hemoglobin that can impact nearly every organ in the body. As so often happens with the condition, Dream has battled a host of complications including chronic pain stemming from diminished levels of oxygen in her cells and a stroke at five years old. She had a haploidentical stem cell transplant in December of 2014.
Dream was hospitalized and placed in isolation for up to four months. She endured vigorous and invasive procedures in preparation for the transplant; including chemotherapy and radiation in order to receive her transplant to cure her sickle cell disease, but not without facing a long road ahead to complete recovery. Diana spent sleepless nights on a cot in Dream’s hospital room except for the times she went home to pack more clothes to return back to the hospital for months on end. Dream was in a severe weakened physical state, immunosuppressive, high risk for infection, and was bed ridden for the majority of her hospitalization. Diana lived every day advocating for Dream in patient rounds with attending doctors and other healthcare-related professionals. As there wasn’t any paid leave from work, Diana partnered with organizations like The Bone Marrow Foundation to help with non-medical related expenses as she would need to eventually take leave in order to ensure Dream made a successful and complete recovery.
Once it was time for Dream to be discharged, Diana anticipated an uphill battle with the insurance company. Diana did a lot of due diligence pertaining to the needs of a transplant patient by speaking with other parents that went through similar circumstances. Diana worked closely with SKIP of NY (Sick Kids [Need] Involved People) – an organization that acts as a free medical concierge, connecting children to the services and equipment they need to get well and live at home rather than in hospitals or institutions – to advocate for Dream’s after care needs as she transitioned from the care of the hospital to outpatient. Dream and Diana were eventually victorious and the insurance company removed the language that put an unrealistic expectation and requirement on Diana, and Dream was later accepted in the New York State Care at Home program. Though victorious, the process under which Diana and Dream had to fight should not happen to other families.
Diana has been working closely with several organizations to teach other families how to advocate for their critically-ill children. She has also been in contact with New York State Senator David Carlucci’s office and proposed an Amendment for Public Health Law §2827. The New York Senate proposed §7293 bill aims to enact the “Dream Law” to “deem central venous lines as medically necessary; require hospitals upon discharge of a patient who medically needs a central venous line after discharge, to consult with the designated caregiver to determine his or her capabilities and limitations.” If you would like to vote in favor of this bill, please click here.
Since being discharged, Dream has been acknowledged as a New York State “Woman of Distinction” and she is healthy, happy, and back in school on the honor roll!