Interview 2 [:

INTERVIEW with Desirae Legerski.
Dedirae Legerski has a one year old daughter who has PWS.


ME: How old is your daughter Mackenzie? and When did you find out that she
had Prader Willi Syndrome?

DESIRAE: My daughter Mackenzie is one year old. She was diagnosed with PWS when
she was 4 1/2 months. They use a blood test called a methylation test to
determine if someone has PWS. Does not tell you what form they got it, but
it tells them if they have it at all. The reason they tested her was she has
facial features, almond eyes, a down turned lip and a long forehead. She had
trouble eating and had low energy.

ME: Aren't the characterictics you named also the same for other disorders? How did they know to test for PWS? How did you feel whenever they had to do the test? and How'd you feel whenever you were told that Mackenzie had PWS?

DESIRAE: The facial characteristics she has are also similar to other disorders. They
also tested her for peroxisomal disorders. When they tested for Prader-Willi
they were not sure that is what it was. They were basically guessing and
taking turns ruling things out. We were scared when we thought she had
PWS but the other set of disorders they tested her for are far worse so we
were almost relieved that it was PWS and not something worse. For the first
two weeks after we found out she had PWS I alternated between being sad
and angry. After those two weeks, I picked myself up and started concetrating on helping her do the best she can.

ME: Did the doctor's explain a lot of what PraderWilli was or did you have to do
most of the research on this on your own? and Had you ever heard of PWS
before Mackenzie was born?

DESIRAE: Our geneticist did not tell us a whole lot about PWS. PWS is a spectrum
disorder meaning it ranges from mild to severe so they thought it best to
only discuss the things that are currently affecting Mackenzie. None of her
doctors have said much about PWS. They just tell us to keep up with her
therapy and we will see what the future holds. i have read everything I can
on my own and joined an email group for parents of PWS children through
age 5. i found this by joining the PWSUSA organization.

I had not heard of PWS prior to Mackenzie being born. We knew something
was wrong but we didn;t know what it was due to her lack of fetal
movement. I put her symptoms into a yahoo search and PWS came up when
she was about 4 weeks old, but the doctors hadn't brought it up, so I just
ignored it. Not a day goes by where I haven't had to explain PWS to
someone. Congress made May national PWS awareness month so hopefully
that will help.

ME: Does the email group help you any with dealing with the difficult situations
you are given?
Wow, did you look into PWS a little bit whenever you googled it before
putting it off and assuming that wasn't what was wrong?
Do you have any other children besides Mackenzie? or Do you think you may
have anymore children in the future,? and Also, How has PWS changed your
life so far?

DESIRAE: The e-mail group is great becasue the parents on it may have had
a similar experience and they can help put my mind at ease and/or offer
great advice. Its nice to be able to communicate with someone in a similar
situation. Doctors don't always understand, but the people in my e-mail
group do.

I read a little, but she didn't have all of the things it said, so I just ignored it
because when you have a sick child nothing is worse than try to self
diagnose. THe stuff I read mentioned small hands and feet and I didn't
think Mackenzie's were small because she was one of the biggest babies in
the NICU. Now, I see her next to other children and her hands and feet
are significantly smaller. People always comment how small her feet are
which is a symptom of PWS.

PWS has had a great impact on my life. I had to quit my job because
Mackenzie has therapy about 8 times a month as well as having to see a
nutritionist, a developmental specialist, an endocrinologist and a
gastroenterologist. We are beginning to eat all our meals at the same time
everyday and keeping all food and snacks in the kitchen. For this coming
easter, we are celebrating egg and candy free because food is for eating and
because of the Prader-Willi childrens food preoccupation food can not be
associated with playing or fun. I have to keep track of everything she eats
becasue her caloric need is different that a "typical" childs. Also, we have
had to spend a lot of money for her health care, growth hormones, and
special toys and equipment she has needed such as an expensive car seat
due to hypotinia. Everyday we spend lots of time workign with her doing
physical therapy to help with her strength and development. In the future
the impact will be much greater, but we love her and don't mind.

I do not have any other children at this time. It is especially hard because she is our first. As far as we have been told, PWS has never occurred twice In any family, so I would like to have moer kids. I haven't 100% decided because our house will be very restricted when it comes to food and holidays involving food, so I almost am worried any other children would not understand and be jealous of their friends who get candy and fast food.