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.

interview(:

I am interviewing a lady named Tammy whos three year old daughter, Kaitlyn,
has PWS.


ME: So, When did you find out that Kaitlyn had PWS? and How did you
react?

TAMMY: We found out she had PWS at 8 weeks. At 4 weeks we were told she had trisomy 15 (something wrong with the 15th chromosome) so doing research we found out it was PWS or Angelmans syndrome. We were very sad and concerned for her future. When getting the PWS diagnosis it was sort of a relief because it was the better of the two according to research.

ME: What did your famiy do whenever you told them Kaitlyn has PWS? and How has Kaitlyn having Prader Willi Syndrome changed your life?

TAMMY: PWS has changed our life because we eat better, try to exercise more and have many doctors appointments.

ME: Do you have any other children? and Are you sorta worried that if you had another child that they would have PWS too?

TAMMY: We have 1 year old twins and we did research about another pws child before having more and found the chances were slim to none and there had never been a reported case of a second child with PWS. They are both healthy.

ME: Had you ever heard of PWS before Kaitlyn was born?

TAMMY: We never heard of PWS before she was born and we are learning so much about therapies and how to help her.

I've surprisingly gotten some people that are willing to help me with this. I'm not as worried anymore, even though i only have until Thursday, which means I'll be living on the computer for the next few days..ohh joy[: haha..well at least I know i won't completely bomb this project.
So today I'm just going to focus on getting some interviews started, so I'm gettin off for today(:

So I've finally started looking for someone to interview. I'm kind of excited, if someone will be willing to help. It'll be interesting hearing how things really are with someone who has been affected by PWS. I'm really hoping someone will help me.(:

Prader-Willi syndrome is a kind of sad disorder. People with PWS have a great chance of being infertile, so they cannot have children. and they have a problem with controlling their weight and need help and support to encourage them to stay on a healthy diet and not eat all the time. They also need help with their speech and learning abilities, so people with PWS need a caring family.

Prader-Willi Syndrome is also a genetic disorder that's caused by a deletion of a gene or something on chromosome 15. Sometimes the daddy's chromosome 15 doesn't get passed to the baby, which is not good, or the baby gets two of the mommy's number 15 chromosome, and since the mommy's number 15 is not active, the baby has no chromosome 15. Sometimes translocation occurs on the chromosome, so some of the chromosome 15 goes and attaches to another chromosome. And sometimes, very rarely though, the chromosome is imprinted incorrectly and the mommy's copy and daddy's copy act differently. All of this sounds pretty smart, but for once i sort of understand what I'm saying. It would be so much better though if i could actually find someone who could give me information that has actually seen or dealt with Prader-Willi Syndrome..

I've learned that PWS is a genetic disorder that often causes obesity because people with PWS can not control how much they eat so they are constantly eating. PWS also causes low muscle tone and mental problems. People with PWS tend to have below average IQ's because they have problems with their memory, but they make up for that with their generally happy attitudes.