Q: What is MLD?
A: Metachromatic Leukodystrophy (MLD) is a rare genetic disease that affects 1 in 100,000. A person with MLD lacks the enzyme Arylsulfatase A. This enzyme breaks down sulfatides. The lack of this enzyme causes a buildup of sulfatides, which breaks down the myelin sheath of the nerve cells in the body. This causes a degeneration of mental and physical abilities, which ultimately leads to death.

Q: How were the kids diagnosed?
A: Jane and Jeff were concerned about Max’s fine motor skills in the fall of 2002. He had been through some medical tests in the summer but all tests were negative. In October 2002, he fell on the playground and they did a cat scan as a precautionary measure. That was when they found the myelin damage on his brain. The pediatric neurologist did an MRI and did blood and urine tests to come up with the positive diagnoses of MLD. Jane and Jeff got the news on October 25, 2002 and had Maddie and Sam tested. They each had a 1 in 4 chance of having the disease but unfortunately, they both tested positive.

Q: How are the kids doing?
A: Max underwent a stem cell transplant on January 16, 2003 in Minneapolis. He is now at home and undergoing Physical, Occupational and Speech therapy. Maddie and Sam are symptom free do to a stem cell transplant at Duke University. In each family, the disease usually follows the same pattern so it assumed that left untreated, Maddie and Sam would have begun displaying symptoms at around age 7. Daily updates on Max and the family can be via the Caringbridge Site. The link is on the link page of this site.

Q: What is the course of treatment?
A: The only treatment available right now for MLD is a stem cell transplant. This is different from a bone marrow transplant in that they use stem cells from umbilical cord blood. There is no trouble finding a match from the existing bank of cord blood. The stem cell transplant is not a cure. Hopefully, it will slow down the degeneration. Going through the transplant and the preparatory chemotherapy is very traumatic to the body and there is a 20% mortality rate associated with the stem cell transplant.

Q: Will Maddie and Sam be treated as well?
A: Maddie and Sam had their transplants Friday, October 3, 2003. Things went well and now we are hoping and praying that the cells do their work. The kids are doing great. We know we have a long road ahead of us, but we will get there.

Q: Is research being done toward a cure?
A: There is some research being done into the fields of gene therapy, enzyme replacement therapy and myelin repair but there is nothing on the immediate horizon.

Q: What can we do to help?
A: We are putting a lot of faith in prayer. Please add the Trimpers to your prayers. If you would like to donate money to help the Trimpers, you can visit their website at www.TrimperChildren.org or you can send a check made out to the Trimper Children Foundation to the following address:

Trimper Children Foundation
c/o Saginaw Community Foundation
100 S. Jefferson, Suite 201
Saginaw, MI 48607

Q: How will the money be used?

A: In order to help find a cure for these children and others like them, we must help fund research. Everything else is just buying time until there is a cure. Money sent to the Foundation will be used only for research purposes. On the website, you can choose to make a donation to fund research or to go to the family. The families expenses, range from medical expenses, travel expenses, home care expenses to having their house made handicap accessible.