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 T-Ball and am running!
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 getting closer to my ideal weight. My calorie intake is about half of what other children can have. Right now I can have 650 calories a day. When you break that down into meals, my dinner is only 150 calories. We have to be very creative!
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, t-ball snacks, 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 if I try to hide food in my mouth and swallow it quickly.
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. Mom says I'm stubborn and Dad says I'm short fused. Kyle thinks I'm mean sometimes. I just 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? ) and I love to dance and giggle just as much as everyone else.
I recently started Growth Hormone injections every night. Ouch! I'm in charge of the bandaid. It is suppose to help me grow and give me strength. I guess we'll see how it's working when I go to the endocrinologist.
He is just one of the many doctors I have seen in 6 years. I have also been seen by a neurologist, pulmonologist, gastroenterologist, orthopedist, opthalmologist, genetecist, 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, two sleep studies and soon 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.
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To learn more, visit www.pwsausa.org