Donate
  December 2017  
SMTWTFS
     12
3456789
10111213141516
17181920212223
24252627282930
31    
Bible Search
Bennett Lenaburg

center

448x336

/userFiles/3506/pa55883_ldfq08.jpg!_!55883

Slide Show Placeholder Box

When you view the live version of this page, you will see a slide show in place of this box. Double-click on this placeholder box to edit the slide show's properties. To remove this slide show from the page, select this box and hit the delete key.

55883!_!448!_!336!_!c

Bennett Lenaburg, the son of Ryan and Kaci Lenaburg, was diagnosed October 17th 2014 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.

* Additional donations can be made at the website above until January 25th or anytime at www.gofundme.com/bennettlenaburg

 

Donate