As a single mother to two boys, life is often a challenge. When I
had my son Brendan 7 years ago I got more than I ever expected.
Brendan was born with congenital CMV, which is the leading cause of
childhood disability in America. He has cerebral palsy, epilepsy
& a wonderfully infectious smile! After he was diagnosed, I
learned about CMV and how many children it affects worldwide. In
2007 I started the Brendan B. McGinnis Congenital CMV Foundation
(cmvfoundation.org) in an effort to raise public awareness and to
support CMV vaccine research so that no more children have to
suffer as does my son. Unfortunately, having a child with CMV also
brings a lot of struggles for parents. My daily life is lifting and
moving my son. Changing diapers and managing medical equipment. It
is difficult. After several years of doing this, my body is
beginning to rebel. I've been diagnosed with arthritis as well as
degenerative disc disease. Taking care of Brendan is challenging
with those conditions. The pain from lifting him is something that
I deal with constantly, and it makes travelling any distance very
difficult. Currently, I lift him in and out of his car seat in my
van, then I lift his wheelchair in and out as well. This is a
constant struggle for me, and I am afraid of what will happen as he
continues to grow, because as he grows, so does his medical
equipment. It's frightening, because at 7 he is currently 65lbs and
nearly 5ft tall. A wheelchair van would be life-changing for us! I
would be able to take my sons places and give them a full life.
Right now, I often avoid going places because of all the painful
lifting. The ordeal involved often makes errands seem to be more
trouble than they are worth, not to mention that my current van is
11 years old, has over 120,000 miles and has more issues than I can
afford to fix. There is no way I can financially afford the
accessible van my son so desperately needs to go everywhere he
deserves to go. This would be a true blessing!
