If you are reading this, I hope that we find you healthy and employed.

Unfortunately, Matthew’s disease is progressing and I find that I am able to leave the home less than I used to. Therefore, the TV and newspapers keep us informed of what is going on out there! It does not look good for many during this holiday season.

Matthew’s disease is progressing as predicted. In November, his seizures started up again and we had to increase his medication once again. The doctor on call made the comment “ he is at the max for all his seizure meds, I don’t know what we will increase.” That was disconcerting, but once again they found a way to increase the medication. I question if we are going to see some side effects from the high doses.

Matthew has lost the ability to talk to us. Frequently he has episodes when he exhibits raging behavior. He continues to fight to stand and try and walk, but the “jerking” prevents functional movement. He requires frequent suctioning, as he is unable to control the upper airway secretions. We try and get Matthew out of the house for a ride in the car or a walk in his wheelchair on a bike path or near the beach. We know that he understands us as he continues to follow directions and respond to commands. We watch a lot of football. Thank goodness for the 40” high definition TV in his room. When we cannot be a part of the world outdoors, there are a lot of good programs to bring the world to us.

We have visitors. Mema and Papa are a constant in our lives. Julie works hard at making our lives bright and cheery. Pam was a godsend when all the evening nurses came down with the flu or a cold last week while Scott was away for work. Ms. Revil and Ms. Ruginis have come to visit and pray with Matthew and I. We welcome all the messages we get from near and far especially Rome, Italy and Ohio. Illness can be an isolating and lonely experience.

We asked Dr. Minnisian for an update on his research: “The problem facing a Lafora patient is the conversion in brain cells of normal glycogen, a soluble sugar, into a starch-like insoluble sugar. This insoluble compound accumulates in the brain cells and devastates their function. How and why this happened was a great mystery until recently. We have now discovered that the problem is that normal glycogen in the Lafora patients acquires excessive phosphate, and that it is this phosphate that distorts normal glycogen and makes it become starch-like and insoluble. We now are trying very hard to uncover where this excess phosphate comes from, and then we will try to prevent this, or find ways to remove it so as to re-normalize the glycogen and keep it from precipitating and accumulating. If we can do this, we can treat or cure our patients. How long the way is from this point towards a treatment we do not know, but we now know we are on the right track”.

We continue to feel optimistic that a cure is within reach. We are not sure if it will be in Matthew’s lifetime, but we continue to hope and pray. Although we know that many may be experiencing financial difficulty we ask you once again to consider a donation to Lafora research. You’ll be doing a lot of good and its tax deductable! Directions for donating are as follows. Please state that you want your donation to go towards “Dr. Minassian’s Lafora research” or the money will go to the hospital’s general fund.

By mail:
Friends of the Hospital for Sick Children, Toronto, Inc.
c/o Roha & Flaherty
1725 I Street, N. W. Suite 300
Washington, DC 20006-2423

Lisa, Scott and Matthew

**Read the update on Caring Bridges for Matthew DeSimas at the link below

To view more updates about Matthew go to http://www.caringbridge.org/visit/matthewdesimas

**CaringBridge is a free, nonprofit web service that connects family and friends to share information, love and support during a health care crisis, treatment and recovery.