Miracles Still Happen

My name is Aidan Pragasam and I am turning 11 on March 23rd, 2005. My mom published this website on my 11th birthday. I had been diagnosed with a rare metabolic disorder called Propionic Acidemia (PA) when I was two months old. Propionic Acidemia is a rare genetic disorder of branched-chain amino acid metabolism. Odd chain fatty acids and cholesterol are also not metabolized correctly by PA patients, but the bulk of the damage to the body comes from consuming a diet too high in protein. Individuals with PA build up propionic acid and other toxins in their bodies if they consume too much protein containing the following amino acids - methionine, threonine, isoleucine and valine. PA patients are deficient in propionyl-CoA carboxylase (PCC), an enzyme responsible for utilizing these amino acids.

Looking back, the last ten years of my life has been an incredible journey. God has blessed me with a good and productive life. He has always given me the strength to go on. I have always been a fighter and have been successful in managing the most difficult times of my life with a smile. I hope the reflections of my life brings hope and awareness for those afflicted with the same disorder. I look forward to the day when there will exist a cure for this disorder and I will be able to function as a normal child.

 

 

I live with my parents and my younger brother in San Jose, CA. My parents adore me and my brother is very fond of me. I love my home and it is the happiest place in the whole wide world. My mom and dad work, but they make sure that I am well taken care of. We do not have any close relatives in this country except for my mom's sister and her son, who live in Boston. I miss my grand parents, uncles, aunts and cousins a lot. They are all in India and I know they love me very much too. Given my health condition, I have been to India only once. My parents are not planning to take me there any time soon. But nevertheless we exchange photographs and they are all very proud of me. My grandparents visit me once in two or three years and I love them very much. I wish they could stay with me always.

I am in the Santa Clara County program of education and go to a school called Sylvia Cassell in San Jose, CA. I am in a special education program there. Chronologically, I am in Grade 5. But since I am in special education, I have been in the same classroom for the past five years. My teacher is Mrs. Etherington (E). She is a wonderful teacher and is always full of energy, overflowing with ideas and discovering new ways to teach us. Besides my teacher there are aides, grandparents, nurses and therapists who are part of the program. I have many friends and I know I am loved a lot here too. I love to go to school and I have been well enough not to miss more than a few days of school this year. I feel very sad when I hear that I need to move to a new school next year. I will make sure that I make the best out of this year.

I also go to an after-school program in Cupertino. It is conducted by the Organization for special need families. There I do art, play music, sing and dance to songs, read and do my homework. School sure is a lot of fun.

Update as of March 2007: I graduated from my elementary school and am in a  middle school called Leyva. I am getting settled in my new school. I have a  one on one aide who helps me in school. I also go to SCORE for extra academic help.

 

I am on a special low protein diet which has to be very carefully monitored. Every bite I eat has to be measured for calorie and protein content. I am fed through a gastrostomy tube (G-tube) 99% of the time. This is because I had several problems when I was young due to reflux and other complications related to my disorder. I normally get bolus feedings, but when I am sick, I sometimes have to be fed by the feeding pump since I often end up throwing up. Inspite of these complications, my parents have never given up trying to feed me by mouth. My formula which is made up of a mix of special powders tastes yucky but keeps me healthy and strong.

My present formula combination is made up of 170 gms of Propimex I, 85gms of 80056, 60 gms of maxamaid and 18 ozs of milk. Water is added to this to make 44 ozs of formula. This needs to be consumed within 24hours. Any food that is taken through mouth should be adjusted against the total intake of my food. When I am sick, I have to take a different combination of formula that has no milk and none of the offending aminoacids that I cannot handle.

I do take a small amount of rice with curry sauce to have at lunch time with my friends at school. Besides that I like plain yogurt, french fries (more likely the salt) and coffee. The coffee is made up of milk with some instant coffee powder. I drink orange juice sometimes and may eat a little tapioca pudding occasionally. But that depends on how I am feeling. I am learning to wait patiently in restaurants when others eat and participate in food preparations even though I don't eat much of the food.

My medications consist of Levo-Carnitine, Isoleucine, Valine and Bicitra. I sometimes have to take Zantac if my reflux gets to be severe. I was also being given Growth Hormones (GH) shots to increase my height and for a better metabolic balance. I have been off it for the past 6 months since my GH levels and the effects of growth hormones on my system are being evaluated. I may go on it again if proven to be beneficial to my overall health.

There are a lot of things I enjoy. First and foremost I love playing with the computer and watching tv. My mom says that I am very good at problem solving and troubleshooting while playing computer games. Arthur, Scooby Doo, Thomas the Tank Engine, Dr.Suess and Mother Goose Rhymes are some of my favourite characters. I also like festivals such as Halloween and Christmas. I love birthday parties and my parents always make my birthday parties a blast. I also like to dance and watch people dance. I love music especially Indian music. I go for a 'creative dance class' in Jeena which is a support group for children with special needs. I am also going to be performing at their annual day celebrations. We also attend parties held at Jeena. Their parties usually have a lot of music and games. I go for swimming twice a week. I am happy always and I make sure that everyone around me is happy too.

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