Re: Pregnancy/Reproductive decisions

[Guest guest]

Dear Malisa,

In retrospect my son has been affected with MELAS since birth. As to the

degree he is affected, it is relative. At one point his pediatrician thought he

had cystic fibrosis. He still has problems with pneumonia and GI issues. Any

cold soon progresses to a bronchitis and pneumonia. His learning disability

was first noted in second grade. He did graduate from college, however. He

has had hearing impairment since at least age three. He is of short stature

and tires easily. As a child he was very quiet for a boy. Poor fine motor

skills. My daughter is less affected. No learning disability. More robust

health but has an atypical scoliosos and kyphosis. Each person in the same

family

is affected to a different degree and different systems are involved. It is

unpredictable. It all depends on the per cent heteroplasmy in each tissue.

When I said I would not have had children had I known I was affected with

MELAS I also have to say the world would have been deprived of two very

wonderful

and capable people had they not been born. My daughter has her Ph.D. and

J.D. and is a patent attorney. She plays the French horn. My son's B.A. is in

linguistics and East Asian studies. He is currently teaching English in Japan.

There are many very capable people who contribute much to society even

though they have disabilities, however they and their families carry an extra

burden, sometimes a very painful one, throughout their lifetimes. My suggestion

is

to consult a good geneticist familiar with mitochondrial diseases before

deciding whether or not to have children of your own gentic material. There are

a

number of reproductive alternatives and the choices are increasing. The

final decision is always a very personal one.

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