My baby brother

Phenylketonuria (PKU) is a rare condition in which a baby is born without the ability to properly break down an amino acid called phenylalanine. Phenylketonuria (PKU) is inherited, which means it is passed down through families. Both parents must pass on the defective gene in order for a baby to have the condition. This is called an autosomal recessive trait. Babies with PKU are missing an enzyme called phenylalanine hydroxylase, which is needed to break down an essential amino acid called phenylalanine. The substance is found in foods that contain protein. Without the enzyme, levels of phenylalanine and two closely-related substances build up in the body. These substances are harmful to the central nervous system and cause brain damage.

Now you may wonder why I would start a post with all this medical jargon. Almost five years ago, my youngest brother came to live with me when my Mom passed away. You see, he was born with PKU and my other siblings could not take him in and none of us wanted him put in an assisted living facility. He is very capable of taking care of himself in many ways but has to be reminded of when and sometime how to do things. If you sat in a room with him you wouldn’t know there was anything wrong with him.

He is 52 years old and healthy. He loves watching TV, riding in the mountains, talking about bear hunting and he is an avid Dale Earnhardt JR fan. His days are spent (mostly) in his room watching television, coloring and “writing” in his notebooks. On very warm days you’ll find him outside sitting on the porch watching for wildlife with the binoculars or riding his “big green tractor” (lawnmower without mowing deck) all over the farm. He has wonderful stories to tell me when I get home in the afternoon. Most of the stories have some added imagination.

The main reason he needs to be with us is because he can’t prepare meals for himself except for lunch (he has his everyday favorite peanut butter and apple butter sandwich). He has to be reminded to straighten his room and bathe. He makes his bed every morning and fixes his cup of coffee before retiring to the recliner to watch TVLand all day. When he first came to live with us, my husband had a small suite built onto the back of the house just for him. He has a sitting area and sleeping area and he calls it his apartment. He has a huge assortment of movie dvd’s and when he’s bored with TV he watches the movies. His exercise consists of going to the bathroom or going to the table to eat. He’s convinced himself that too much walking with cause his knee to go out which it has several times but only when he was working in the yard when Mom was alive.

There are several health issues we may face with him in the future but for now he is doing fine and refuses to see doctors of any kind. We are fortunate in the fact that he is healthy. He doesn’t require any special attention but does need to be checked on during the day and this has come to bear on my husbands shoulders since he’s home being the full time farmer and I have to work to have health insurance (enough about us).

This is just another fascinating facet of my life on the farm!

One response to “My baby brother

  1. Carrie Crawford

    Rita, you failed to mention that Dean was one of two of your brothers who was diagnosed with PKU. Rita lost her youngest brother, David, when he was just 8 months old I believe, who also had PKU. Dean is very fortunate to have such a loving and caring sister and brother-in-law to look out for him. You and Eddie are to praised for you kind hearts. Dean has always had such a sweet spirit, he is a joy to be around.

    Like

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