Thank you for visiting my fundraising page!  My mom created this fundraising page to help raise money during Prader-Willi Syndrome Awareness Month.  With your donation we hope that research will lead to a cure for the syndrome that has affected me since birth.

 

 Here is how it has and does impact my life:

 When I was born I had low muscle tone and had trouble learning to drink from a bottle.  I could not lift my head when I started physical therapy at four months old.  I never learned to crawl as an infant, I scooted on my bottom.  I took my first steps when I was 28 months.  Yeah!! Now, I play soccer and am running! I also swim with Special Olympics and love to dance!

I continue to have some speech delays and you might not understand everything I say because I still have low tone and the words don't always come out the way I want them to.  I go to speech therapy at school twice a week.

At about 2 1/2 I started showing signs that I was always hungry and started gaining weight quickly.  When my correct diagnosis came at 3 1/2 I was already considered obsese by the doctors.  With a strict eating schedule and low calorie diet I am trying to get closer to my ideal weight.  My calorie intake is about half of what other children can have.  

 Since I love to feed my always hungry belly, I might try to sneak or steal food.  I'm learning how to handle birthday parties, school recess/lunch, and holidays where I see so much food and I only get a small serving.  I have to be watched carefully around food because I'm quick!  There is a real danger in me choking.  Just ask my dad.  He saved me once.

 At my house food is locked in the pantry and refrigerator so I don't get things I shouldn't.  It sounds strange to most people but I'm glad the locks are there.  It helps me not to feel so anxious about food all the time because I have food security. 

I do have some behavior problems that I wish I could manage better.  I like things my way and ask lots of questions. I just get anxious about things.  I  need patience and understanding.  Teach me how to work out problems and I'll try my best.  Don't forget that I also give the best hugs ( right Pops? ).

I get Growth Hormone injections every night. I'm used to it now and don't really mind.  It is suppose to help me grow and give me strength.  The endocrinologist also started me on thyroid medicine last month. I'm a big kid now because I can swallow a pill.

My endo is just one of the many doctors I have seen in 9 years.  I have also been seen by a neurologist, pulmonologist, gastroenterologist, orthopedist, opthalmologist, geneticist, occupational and physical therapists, and a dietician. I have had CT Scans, x-rays of my spine, an Upper GI, tons of bloodwork, a pelvic ultrasound, three sleep studies, and an MRI.

 My mom says I am the best patient, because I actually don't mind all the doctor's visits so much.  I like being the center of attention, she says.  She is thankful God has made me that way.

 It is a challenge for me and my family each and every day to live with this syndrome.  But, God gives us strength for each new day and every obstacle we face.  If it is in His plan to have scientists find a cure, then we hope it comes soon.  As we wait, please keep us in your prayers and consider a donation to a worthwhile cause.

If you are able, a donation to the Prader-Willi Syndrome Association will help a wonderful organization continue to help families and fund research that can bring us closer to a cure.

Please share this page with anyone you can! 

 To learn more, visit www.pwsausa.org