MacKenzie and Spencer Frechette

MacKenzie was born May 29th, 1993 and Spencer July 28th, 1995. Completely normal infants and toddlers...even into preschool and 1st grade. Then things started to change. Very subtle changes that no one could really put their finger on because they were still developing somewhat normally. It was almost as if they were having mini-strokes. A little stuttering that improved with speech therapy, some troubles with fine and gross motor skills. Mackenzie’s decline was on a very gradual slope, but Spencer’s was far more pronounced. He went from a little boy that could drive a golf ball 75 yards on the first swing and being able to play baseball and soccer, to a child that was totally uncoordinated. Not only were Greg and I as parents dumbfounded, but doctors were at a loss. We had MRIs, C.T. scans and lab work...nothing but an umbrella diagnosis of autistic spectrum disorder. Until finally we were sent to a geneticist, after another round of lab work we were given the devastating diagnosis of Juvenile Onset Tay-Sachs disease. At this point, March 2005, Greg and I had already been divorced for 5 years. Our single goal together is to make our children have the best lives possible. Any differences we may have had were set aside, thank goodness, because we had no idea what we were in for.

We try to live each moment to its fullest. MacKenzie and Spencer have a step-father Rob and a step-sister Camdyn (7 y.o.) and a baby brother Trenton (10 months) As a family, which means all of us, including their daddy, we have gone on one trip to Disney and are leaving tomorrow to go to Panama City Beach Florida together. I was fortunate enough to be able to take them to Germany in 2006 with my mother. I have an entire set of relative in Europe, my mom is from Germany. And while I went every few years and kept in close touch, it wasn't until 2006 that they were able to go. They have been to Canada multiple times and all over the state of Michigan where we live. We took a trip with my step-mothers family to Myrtle Beach, and they went with Greg and I to New York City for a week. For their ages (13 and 15) they are well traveled.

There have been ups and downs with health issues. We have place both of them on hospice services, which has given us an immense amount of support and helped to keep us out of the hospital .Spencer doesn't walk or talk anymore. But he is alert and understands everything that is going on around him. I often think of how frustrating it must be for him not to be able to express himself, but he still gives a whole lot of his good lovin' to all of us and gets tenfold in return. MacKenzie has been battling pneumonia off and on for 7 months and was intubated once during that time, but she still has a sparkle in her eyes and her mischievous grin that shows her dimples so well. Her beauty is radiant. At this point she is a little unsteady on her feet, but still is able to walk. Her speech is limited, but she still gets her point across.

We together have overcome many hurdles. The most difficult being things related to their health issues. Unfortunately I am sure there will be many more of those. I am so thankful that I became a nurse after many years of being a cosmetologist, my husband is also a nurse. Sometimes too much knowledge isn't the best either. But is has also helped us in many situations...that and the NTSAD message board.

Our goal is that they experience life to the fullest extent that they can and that at the end of the day they go to bed knowing how much they are loved and feel safe. We don't live for tomorrow...we live for the moment and cherish every one of those. I have learned so much about unconditional love and strength form these two beautiful children, yet my heart breaks a little every day because there are so many things that I will never get to share with them. So each moment is precious, and the little things that "normal" families take for granted, well let's just say that nothing is taken for granted in our not so "normal" family

For more information and updates please visit http://www.caringbridge.org/visit/mackenzieandspencer