This is my son Aadarsh. Aadi is our youngest son. He is 6 years old MashaAllah, and this my son’s story.
Aadi was a premature baby, born on 28th week and he was born with a low birth weight which was 1.5 kg.
Delayed milestones, cognitive delays. He took his first step towards me when he was 2 years old. Soon he started speaking when he was 2.5 .
When he was around three,he developed in toeing (paon ka ander ki tarf murr jana).we didn’t know what it was at first so we suspected that it was club-foot. Once tested and after many more tests, a rehab specialist known to us advised us to have a blood test CPK; to rule out possibility of dystrophy.
We have no known family history.my two elder son’s are fine.so we were not expecting anything out of the test. Anyways,the result was positive. His CK level was very high. After following a group of tests. PK-creatinine phospho kinase CK-MB-another blood test Aldolase-one more blood test then, EMG-electromyogram
NCS-nerve conduction studies.
All of these tests confirmed our worst fears that indeed he had muscular dystrophy;and symptomatically it was declared to be Duchene Muscular Dystrophy.
In books it is written that DMD patients usually loose their ability to walk by 12 years of age. Most of them develop serious heart conditions,lung failures by the age of twenty. Mostly don’t survive by 25.
BUT books can be wrong. They have been proven wrong.
Many new researches are going on. Some medicines some procedures have been introduced in the market. I am sure some treatment will be available in 2/3 years IA.
These are the tests which could not be done here,in Pakistan. Specific immunocytochemistry analysis Specific Karyotyping/chromosome analysis Specific Genetic mapping.
Now at six years of age Aadi is wearing modified shoes,night splints and having soft stretching exercises twice a day.
This is my baby Aadi, and this is a call for help.i don’t have the resources to take him abroad.even if we are able to arrange the money; first we have to know the exact type of his dystrophy.
This is a mother’s desperate call. Please share some information,if you can.what to look and where to look for,for his exact diagnosis. Please Help!
Contact her for more details at
Raheela Irfan [raheela.irfan09@gmail.com]
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