Fund for Nathan's Hope Clinic Established
Media Contact: , (859) 361-1887
LEXINGTON, Ky. (Oct. 10, 2008) – A fund has been
established by Lynette Crist in honor of her son, Nathan Matuszewicz, for Nathan's Hope
Pediatric Pulmonary Hypertension Clinic at Kentucky Children’s Hospital. The fund
will be used to help the clinic provide enhanced patient care and research. The fund will also
make it possible for the clinic to offer support services for patients and their families from
all of Kentucky.
Nathan was born in 1990 in Van Nuys, Calif., and was the son of Lynette Crist and Bryan Matuszewicz. When he was two years old, they moved to Lexington, and in 1993, Nathan was diagnosed with primary pulmonary hypertension. He was an active child who loved his family, friends, animals and playing outdoors. The only outward sign of his disease was shortness of breath with exertion. Nathan died at the age of eight.
"Nathan loved life so much," said Crist. "He never met a stranger and was always trying to make people smile. When reading the journals his friends wrote to me about him after he passed away they all remarked about him always smiling and being everybody's friend. I am so happy to be able to be helping others in his memory this way. I know Nathan would have wanted this. I believe he is watching over us with a big smile on his face."
Primary pulmonary hypertension is a rare disorder in which the pressure in the blood vessels of the lungs becomes abnormally high and life-threatening. Although the symptoms can be managed with a number of medications, no drug or treatment has been developed to cure or halt the progression of the disease.
Dr. Thomas DiSessa, professor of pediatrics, division of pediatric cardiology, University of Kentucky College of Medicine, is director of Nathan's Hope Pediatric Pulmonary Hypertension Clinic at Kentucky Children’s Hospital. "We are very grateful to Lynette Crist for establishing this fund. I have been caring for children with pulmonary hypertension for many years. When this disease occurs, it is a life-long illness and could be terminal. Some patients could require a heart and lung transplant. Over the past 10 years, medical therapy has advanced significantly with new medications and new ones on the horizon. The outcome for our patients also has improved significantly.
The director of the clinic said that when he was at LeBonheur Children’s Medical Center in Memphis, Tenn., he cared for eight patients with the disease. At the time the three year survival rate with patients on medications was 63 percent and the three year survival rate for those not on medications was 35 percent. "Currently, the survival of patients with pulmonary hypertension has continued to improve due to advances in therapy."
There is a need for a special group of people to care for children with pulmonary hypertension. There will be a team of physicians and health care professionals from a number of specialties that will provide important care to these children. Cathy Johnson is the nurse coordinator of the clinic at Kentucky Children’s Hospital. "While working for the department of pediatric cardiology, I have recognized the need for comprehensive care for the pediatric pulmonary hypertension population," Johnson said. "My goal is for us to be able to provide this type of comprehensive care in a manner that promotes comfort to patients and their families."
The expected survival rate for children is 30 to 35 percent after diagnosis. With new medications, it is 60 to 70 percent. The survival rate has doubled and the quality of life has been improved for patients.
For more information about the clinic, call (859) 323-6754. For more information about Kentucky Children's Hospital, call Loralyn Cecil at (859) 257-1106.
Nathan was born in 1990 in Van Nuys, Calif., and was the son of Lynette Crist and Bryan Matuszewicz. When he was two years old, they moved to Lexington, and in 1993, Nathan was diagnosed with primary pulmonary hypertension. He was an active child who loved his family, friends, animals and playing outdoors. The only outward sign of his disease was shortness of breath with exertion. Nathan died at the age of eight.
"Nathan loved life so much," said Crist. "He never met a stranger and was always trying to make people smile. When reading the journals his friends wrote to me about him after he passed away they all remarked about him always smiling and being everybody's friend. I am so happy to be able to be helping others in his memory this way. I know Nathan would have wanted this. I believe he is watching over us with a big smile on his face."
Primary pulmonary hypertension is a rare disorder in which the pressure in the blood vessels of the lungs becomes abnormally high and life-threatening. Although the symptoms can be managed with a number of medications, no drug or treatment has been developed to cure or halt the progression of the disease.
Dr. Thomas DiSessa, professor of pediatrics, division of pediatric cardiology, University of Kentucky College of Medicine, is director of Nathan's Hope Pediatric Pulmonary Hypertension Clinic at Kentucky Children’s Hospital. "We are very grateful to Lynette Crist for establishing this fund. I have been caring for children with pulmonary hypertension for many years. When this disease occurs, it is a life-long illness and could be terminal. Some patients could require a heart and lung transplant. Over the past 10 years, medical therapy has advanced significantly with new medications and new ones on the horizon. The outcome for our patients also has improved significantly.
The director of the clinic said that when he was at LeBonheur Children’s Medical Center in Memphis, Tenn., he cared for eight patients with the disease. At the time the three year survival rate with patients on medications was 63 percent and the three year survival rate for those not on medications was 35 percent. "Currently, the survival of patients with pulmonary hypertension has continued to improve due to advances in therapy."
There is a need for a special group of people to care for children with pulmonary hypertension. There will be a team of physicians and health care professionals from a number of specialties that will provide important care to these children. Cathy Johnson is the nurse coordinator of the clinic at Kentucky Children’s Hospital. "While working for the department of pediatric cardiology, I have recognized the need for comprehensive care for the pediatric pulmonary hypertension population," Johnson said. "My goal is for us to be able to provide this type of comprehensive care in a manner that promotes comfort to patients and their families."
The expected survival rate for children is 30 to 35 percent after diagnosis. With new medications, it is 60 to 70 percent. The survival rate has doubled and the quality of life has been improved for patients.
For more information about the clinic, call (859) 323-6754. For more information about Kentucky Children's Hospital, call Loralyn Cecil at (859) 257-1106.