Here is a sample of my hypothetical family situation. Does this story sound realistic?
Do you know of people or families that have experienced Leighs? Do you think that I have added enough details describing my families situations? If not what things in reading this would you be interested in knowing more about this family?
We are a young couple in our early thirties who have decided to adopt a baby. Both our careers are established as lawyers and we are now ready to start a family. Our baby is a beautiful little girl that we name Clarissa which is my late grandmother’s name. We love our baby and she is growing like a beautiful flower. At about the age of 6mths we notice that she has stopped growing and she is no longer babbling, lifting her head or supporting her body at all. As her development began to slowly digress, Clarissa was soon diagnosed with Leigh’s disease.
Leigh’s disease is a progressive neuromatabolic disorder which usually onsets at infancy or childhood. What is happening is that the brain tissues are dying, particularly in the brainstem. Now at 1 year old Clarissa can not hold her head up any longer, nor dose she have the capacity to crawl even babble.
Though both my husband and I are both professionals, I quit my job to stay home and take care of our little Clarissa because we do not know how long we will have her. When both of us were working, we considered ourselves upper middle class and we never struggled. After I quit my job to stay home with our child and because of her special needs, we now consider ourselves middle class and struggling.
Because we are in a different place financially and can’t afford many things as we use to, we could use some extra help. However with the economic, social culture and political challenges that are currently happening we are struggling worse and quickly using up any savings that we have had.
Gloria,
ReplyDeleteWhat type of early childhood services do you think your family could use to assist your family? Do you think an early intervention program could assist with developmental issues, mental health issues for the family, or with assisting your family with local community resources?
Gloria,
ReplyDeleteYour story does sound realistic. There have been what we consider to be financially stable families that have a child with a special needs that causes one to make a decision to stay at home with the child, which then cuts the income in half. But too often families in this situation are left to defend themselves and often borrow monies that cause them to go deeper and deeper into debt.
I think that you have added enough details to describe your hypothetical family situation.
I took away the realization of how difficult it would be to cope with the diagnosis as well as the financial strain. Hopefully, family counselling would be sought if the marriage started to suffer as a reult.
ReplyDelete