Disability: Rare Genetic Disorder that causes low muscle tone

Aayush has a rare kind of genetic disorder which has cause generalized low muscle tone in his body. Due to his low muscle tone/congenital myopathy Aayush has delayed developmental milestones.

Aayush is a charming 9 year old boy who has amazed us with his achievements. I am so proud of my son today. Aayush was born with a generalized weak muscle tone. He was on a ventilator for 45 days after his birth. He was born at Menorah hospital in Overland park KS and was transferred by an ambulance to Children’s mercy downtown and was there for over a month until they discharged him. Initial years were very tough. He was very floppy, Dr use to compare his with a noodle. He hardly lifted his arm or kicked his legs. We started physical and occupational therapy for him soon after his birth. After few months he started showing signs of improvements and started developing. He is still very weak physically and mentally. He needs a lot of assistance at home as well as at school. In spite of all this limitations I am so proud to tell you that he has come a long ways and is a handsome 4th grader.

I can keep writing and talking about his achievements all day long. He was completely non-verbal until age 5, with the help of his therapists and at home work he started talking and now he doesn’t stop talking. He was on liquid/ puree food/ diet until now but again with the help and efforts he is trying to eat soft food and chips. He can now read and write with some prompts. All his teachers at school love him. Wherever we go grocery stores, zoo, library we see people calling him as he is so popular at school and around the community. He has developed a liking to draw school buses. Needless to say we have thousands of his school bus drawings at home. 🙂

He loves to sing and has amazing memory. He tries to memorize songs or poems and repeat them. He is a self-starter and if he is interested in things he will try to get into it and learn it. We brought a speaker at home last month. Aayush wanted to try it so he went and said ” pledge of allegiance” we were blown away with joy when we heard it. He is so much joy to have.

He loves to talk to people. He greets and asks their name every time he sees new people.

He loves to read about space and earth. We love reading together.

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