Bennett's Battle with MPS 1
Donation protected
Bennett Lenaburg, the 7 month old son of Ryan and Kaci Lenaburg, was diagnosed October 17th with MPS 1 Hurler Syndrome. MPS 1 is an incurable, terminal condition resulting from a very rare genetic disorder that leads to progressive skeletal, tissue, and organ dysfunction. Incidence rates for this disorder are 1 in 150,000 live births.
Bennett’s diagnosis stemmed from a spinal x-ray that quickly led to OU Children's Hospital and a team of specialist, led by geneticist Dr. Marsha Pratt. Bennett will benefit from the early diagnosis, as often significant damage to susceptible areas has already occurred before a Hurler diagnosis is made. He will be the youngest patient to be treated for the disorder at OU
Children’s Hospital.
Treatment of Hurler Children centers on delaying disease progression and managing the emerging symptoms. Weekly enzyme replacement infusions provide some benefits to organs and soft tissues, but do not delay brain or skeletal decline. Bone marrow transplantation can help to slow the progress of brain and skeletal symptoms, which can lead to a better quantity, as well as a quality of life. But bone marrow transplant is a high risk procedure that requires a strong donor match to be successful. Bennett’s 4 year old brother Bryer is currently undergoing testing to see if he can be that strong match.
Dozens of surgical interventions are common in Hurler children to address cardiac, airway, skeletal and other organ issues. Bennett begins this part of the process on November 3rd with surgeries to correct airway concerns and to prepare him for treatments that will soon follow.
Success in treating severe MPS children begins with awareness and an early diagnosis. Visit the MPS Society website at www.mpssociety.org to learn about MPS disorders and how to help find a cure.
The family thanks everyone for their concerns, and especially their prayers. The road ahead is very uncertain but God knows every hill and turn. Please keep Bennett and his family in your prayers. His progress can be followed at www.facebook.com/Bennettryanlenaburg.
Bennett’s diagnosis stemmed from a spinal x-ray that quickly led to OU Children's Hospital and a team of specialist, led by geneticist Dr. Marsha Pratt. Bennett will benefit from the early diagnosis, as often significant damage to susceptible areas has already occurred before a Hurler diagnosis is made. He will be the youngest patient to be treated for the disorder at OU
Children’s Hospital.
Treatment of Hurler Children centers on delaying disease progression and managing the emerging symptoms. Weekly enzyme replacement infusions provide some benefits to organs and soft tissues, but do not delay brain or skeletal decline. Bone marrow transplantation can help to slow the progress of brain and skeletal symptoms, which can lead to a better quantity, as well as a quality of life. But bone marrow transplant is a high risk procedure that requires a strong donor match to be successful. Bennett’s 4 year old brother Bryer is currently undergoing testing to see if he can be that strong match.
Dozens of surgical interventions are common in Hurler children to address cardiac, airway, skeletal and other organ issues. Bennett begins this part of the process on November 3rd with surgeries to correct airway concerns and to prepare him for treatments that will soon follow.
Success in treating severe MPS children begins with awareness and an early diagnosis. Visit the MPS Society website at www.mpssociety.org to learn about MPS disorders and how to help find a cure.
The family thanks everyone for their concerns, and especially their prayers. The road ahead is very uncertain but God knows every hill and turn. Please keep Bennett and his family in your prayers. His progress can be followed at www.facebook.com/Bennettryanlenaburg.
Organizer
Chelsea House
Organizer
Hinton, OK
