Showing posts with label genetic disease. Show all posts
Showing posts with label genetic disease. Show all posts

Saturday, June 27, 2009

Book Review: Handle with Care

I bought Handle with Care several months ago, but for some reason, I got distracted (with other books) and didn't pick it up again until I got on the airplane last week. I brought it with me to my sister's house, thinking I might actually have time to read between hanging out with her and my parents and the three boys (my son and 2 nephews).

I finally was able to start reading it again in the jacuzzi bathtub that my parents finally invited me to use for the first time. They've lived in their place now for over four years and it took my son having a jacuzzi bath for them to offer me the same opportunity, but I digress.

The bulk of the book was read on the plane ride back home. My son is an amazing traveler, closing his eyes just after take off and opening them again two hours later, with enough time for me to complete the last half of this emotionally charged book by Jodi Picoult.



There's many controversial stories inside Picoult's novels, with heart-wrenching stories and endearing characters who are given their own voice in her books.

The many characters in this novel deal with disabilities, divorce, eating disorders, abortion and adoption. Jodi does a fabulous job, once again, covering the many sides to each story, giving every one of the characters a unique voice whom I believe all readers will be able to relate to on some level. She carries out this thought-provoking and heartbreaking story with an ending like no other. Actually, the ending wasn't really surprising to me, since it mimics the ending of another story of Picoult's. I won't say which one, but fans will have to let me know if you agree or disagree if or when you read this one.

Discussion questions for book clubs can be found on the official Jodi Picoult website, along with information, reviews and interviews.

My Sister's Keeper is out in theaters this week. I highly encourage you to read the book if you haven't already. It's one of my favorites.

Wednesday, March 4, 2009

The #1 Genetic Killer of Infants

Even though I'm exhausted, I need to share this message that I received today from a dear friend. I had to read it several times before I was able to really register what it said.
"As you know, my sister and her partner had a baby girl this past October. Yesterday, after many, many tests, the baby was diagnosed with Spinal Muscular Atrophy Type 1, SMA for short. Unfortunately, there's no cure and as the disease progresses it rapidly attacks the nerves, affecting her breathing and muscle development. As of now they have given her 3 months - 1 year. On top of this, because both my sister and her partner carry the gene that causes this, any children they have in the future will most likely be born with this as well. My family is strong and has handled stuff like this many times, but it's devastating. After they put in the feeding tube this week they will be able to bring her home where they will try to give her more love and comfort. There is hope...there's always hope. There is an experimental drug that can help hold off the progress while they research for a cure. She will be receiving this drug in hopes that they can find a cure."
My heart is breaking for the new mom and dad, grandparents, aunts, uncles, cousins, friends and community who have fallen in love with this precious little baby.

I'm grateful for the fact that my son is healthy, in every sense of the word. I'm glad that even though today was a rough day for the two of us, I was able to chase him on the playground, hold him when he cried, and sing him to sleep tonight.

When all is said and done, I need stories like these, unfortunately, to remind myself just how blessed I truly am, how strong mothers and fathers can be and how truly precious each and every one of our lives really are.
"Don't pray when it rains if you don't pray when the sun shines."
I was feeling helpless and sad when I read the email for the first time. Then I became angry and now, as I'm typing this, I'm near tears once again because it really is unfair that this disease affects so many families and why have I never heard of SMA until now?

I want to help. I want to give my friend more hope and pass something on to her family that perhaps can provide them with a little bit of faith as they deal with each day of this battle.

I'm donating money in this baby's name to both the SMA Foundation and Families of Spinal Muscular Atrophy. I challenge each and every one of you to do the same. You may not know of anyone who has had a child diagnosed with this disease, but it's the most common genetic cause of death in infants and there is no cure.