Lisa Santos’ Parent Diary: Thursday, February 19, 2009

Dear friends,
Once again, it has been some time since I have sent you an update on Matthew. The reason is that there are many days that we are overwhelmed and exhausted caring for Matthew at home. Since the first of the year Matthew has been experiencing changes in his physical and mental status that is making our life more challenging. He very rarely responds to our inquiry to determine what his needs are. Most of the time he will look at us but he cannot seem to gather all that it takes to answer our questions or get a message back to us. Occasionally he will respond and we are relieved to know that he is still connecting to us on some level.

There is evidence of disease progression in other ways too. Matthew is experiencing more difficulty controlling his upper airway secretions and managing bodily functions. This all translates to more work for us. Matthew has experienced problems with hallucinations, which result in him becoming quite agitated. There are nights when he could not settle down and his heightened activity level keeps us all awake. Yes, there are medications available to help him and us with this. We have found some work and sometimes they have made matters worse. We have nurses helping us care for Matthew 40 hours/week. We have Personal Care attendant time available, but we have not filled it yet as that can actually create more work for me.

Scott and I are trying to pay closer attention our own needs. We are Caregivers and it easy for us to fall into trouble physical, emotional and social needs and forget that we have the same needs too. I went to the dentist for the first time in a long time. I thought maybe it had been 2 years since my last appt. only to find out it had been 5 years. Since then we made a commitment to follow through with all our healthcare needs. We also make a point of getting out at least once a week for dinner or recreation.

Recently there have stories in the news that we could relate to on a personal level. John and Kelly Travolta losing their son unexpectedly because he had a seizure when he was left alone. The Axelrod story in Parade magazine in which a mother describes the horror of how her life changed in a second because her daughter started having seizures that medication could not control. Susan Axelrod struggled to keep up with helping to care for her daughter while trying to pursue her own personal interests. The disease of Epilepsy, like all chronic illnesses has a mind of its own. Just when we think Matthew may be experiencing some stability in his illness, Epilepsy rises up and calls for our attention again. In our case as well as others, we hang in there to support our loved ones. If not us then Who?

I leave you with a request to help us find a cure. In July we will once again have a Yard Sale. We still collect cans (we remove the tabs to support the Shriners). 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

[] and click on “Donate” and make a credit card gift to Friends. You may search for Friends by its full name “Friends of the Hospital for Sick Children, Toronto, Inc.” or by EIN 52-1432586
You can also go to Chelsea’s Hope [] to learn what the Gerber family has done to raise money for research. We are making strides in helping the researchers. We desperately need your help as these kids depend on it.

Looking forward to Spring and your help.
Lisa (Director of Trash and Laundry), Scott and Matthew.

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

To view more updates about Matthew go to

**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.