Rolf gives stylish new haircut to Olivia Hoffmann,
a brave 6 yr-old battling Metachromatic Leukodystrophy (MLD)

Rolf's and Channel 3 partner to raise awareness about Olivia Hoffmann and MLD

View full Channel 3 Video and Story

August 11, 2004, at the age of twenty-seven months, Olivia Hoffmann, six year-old daughter of Christine (Gootjes) and Eric Hoffmann, was diagnosed with Metachromatic Leukodystrophy (MLD). In less than a year, this rare, terminal disorder caused Olivia to go from a healthy, smiling, bright-eyed little girl to a child who can no longer control any movement, talk, eat (she’s fed through a feeding tube), see, or even smile.

What is MLD? One of the metabolic disorders known as leukodystrophies, MLD is caused by a genetic defect that prevents cells from producing the enzyme arylsulfatase A (ARSA), which the body needs in order to break down a fatty substance known as sulfatide. Lacking the ARSA enzyme, sulfatide builds up in the brain and spinal cord, destroying the white matter called myelin, which surrounds and protects the nerves. Without the myelin insulation, the nerves gradually quit working. This 'demyelination' causes all of the problems of MLD, which include loss of mental, motor, and organ functions, and eventual death.

Children like Olivia, with the late-infantile form of MLD (there are also juvenile and adult forms), may live 5 years, but so far the disease is always fatal. Bone marrow transplantation, which can slow down the progression of MLD, has been an option for some patients, but it will not be a possibility for Olivia.

Rolf's heard about their story when Christine's friend had called the salon looking to see if anyone could come to the house to cut Olivia's hair, being it was such a challenge to bring her into a salon. When the story got back to Rolf he said, “Not only will we send someone over, I will personally go to see Olivia and cut her hair myself.”

Channel 3 Newstaff Dan Davis, a five-time Emmy®-nominated anchor (with one Emmy® statue to his credit) on Good Morning Arizona decided to bring the camera and film Olivia's haircut and also interview Christine, Olivia's mother. The segment aired Thursday, Aug. 14th at 7:45AM on 3TV's Good Morning Arizona. To view the full Channel 3 story, please click here.

We continue to hope for new research breakthroughs in the near future for Olivia. In the meantime, her parents are keeping Olivia as comfortable as possible and enjoying every day they have with her. If you would like to donate to Olivia's Fund, or find out more information on MLD, please visit the website for ongoing updates and information http://www.caringbridge.org/az/olivia/