Wednesday, 2 July 2008

Reference letter about the kids

I recently requested a reference letter about the kids as my husband needs it to apply for leave extension. Here is an extract of the letter :

"Though both these children were diagnosed in 2008, they have been born with this condition and this condition is likely to restrict their life span. Morquio Syndrome, type A, occurs due to an inherited defect which affects the chemical processing of large chemicals within the cells of the body. Affected patients with Morquio Syndrome type A therefore have severe bone and spine deformities and have a very short stature. Several organs are involved. This can lead to a very poor quality of life and the life span can be shortened significantly (usually less than 20 - 30 years at the most) Patients usually lose mobility before the age of ten and will be fully wheelchair bound. They are likely to require several surgical procedures during their life time to protect their spinal cord and correct bone deformities. They are also likely to require treatment for recurrent chest infections and at a later stage support with breathing apparatus"
I sobbed my heart out over reading this especially the part on "restrict their life span". I really hope that the enzyme replacement therapy will materialized and the kids will live longer - long enough to take care of us during our old days...

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