A young girl battles severe disabilities that has compromised just about every aspect of her daily life. The story is written by her mother.
My daughter, Nashi Danielle, is eight years old; yet she is nothing short of a miracle in our eyes.
When she was born, she seemed okay--that is, she reached her earlier developmental milestones. However, at about the age of six months, we noticed that she seemed "floppy" in nature; she couldn't hold her head up. Every time she tried, it would fall back down. She cried continuously; we got alarmed, so we took her to her pediatrician, Dr. Myanmar.
Dr. Myanmar noticed these changes too; he became concerned. We were then told to see a specialist, a geneticist, as he suspected that our daughter had a congenital disorder.
His news alarmed us; but nothing like when the test results came back several weeks later. It was hard seeing our child undergo repeated painful tests/procedures; to hear her screams or cries upset us greatly; we wanted nothing more than this nightmare to be overwith.
The news came back. It was not good news at all. Nashi had something I had never even heard of; she had something called Canavan disease, which is a rare neurodegenerative disorder which would mean progressive disability--and worst of all, it was fatal; most children who have it didn't live beyond the age of four.
However, he said, there were cases where people with Canavan disease lived to their teens, even twenties; but most died before they reached the age of five.
He was telling us that our Nashi was going to die.
Of course, at the news we cried. Oh, how we cried! Yet at the same time we were relieved; we now knew what was going on with her, and we decided to make whatever time she had left on this earth worthwhile.
It must have worked because eight years later, Nashi Danielle is still here. She is severely disabled, unable to walk, talk, eat (our daughter is fed via a gastro tube inserted in her belly; her medications are given this way, too, every four hours, day and night), even see. We spend many an hour trying to keep her as happy and healthy as possible.
Unfortunately, due to the fragility of her health, Nashi can fall sick at the drop of the hat. She cannot swallow, so she is prone to choking episodes, or to serious respiratory crisis that have sent her to the hospital, fighting for her life. Nashi is prone to all sorts of scary infections. The past four months have been especially tense: she has been in the hospital five times; twice she nearly died on us when she stopped breathing.
Yet her life was spared; she is now here, back home, where she belongs, but she has a whole army of caretakers: family, friends, nurses, doctors, all who play a part in keeping her healthy (or as healthy as possible for her situation). We spend many a time keeping shifts, with her tube feedings, administering her meds, making sure she's clean, changing her diapers when she messes in them (that's every two hours), and praying for God to spare her yet another ambulance trip to the hospital.
It's scary having a child with Canavan disease; yet it helps knowing we aren't alone. A lady in Canada has written a wonderful book, "Lessons From Jacob: A Disabled Son Teaches His Mother About Courage, Hope, and Living Life To The Fullest", about her son, Jacob, who has this disease.
Like Nashi, Jacob Schwartz has lived longer than a lot of kids with CD; he's now ten, and is beating the odds every day. It is an eye opening look into what it's like parenting a child with such significant disabilities, and through her book, I have since contacted an organization specializing in rare or fatal genetic diseases.
I don't feel so alone now; don't feel like I'm in the dark.
I have learned much about Canavan disease, and have learned to see the beauty, the potential, the hope in my severely disabled daughter. She may not be able to do much in life, but all who have met her or have seen her have been touched by her courageous spirit, which helps us all in the long run.
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For more information about Jacob Schwartz, or Canavan Disease, you can go to a website called www.jacobsladder.ca. or purchase the book "Lessons From Jacob: A Disabled Son Teaches His Mother About Courage, Hope, And Living Life To The Fullest", written by Ellen Schwartz, Jacob's mother, through www.amazon.com or www.barnesandnoble.com.
Karen, I haven't heard of this desease either. A very close relative's daughter is terminally ill. She's six and it's heart breaking to see an innocent child go through so much pain.
Thanks for the info, though!
Love,
Becca~
Thank you Karen for this information and awareness, as Sandie says Miracles do happen when the child gets unconditional love from everyone.
Thank you for sharing.
An informative write; until I had gotten you the book, "Lessons from Jacob: A Disabled Son Teaches His Mother About Courage, Hope and Living Life to the Fullest," I'd never heard of Canavan disease. You bring human-ness to your characters; they are believable. Well done.
Re-Release! No longer back-listed. Return to the Olde Ways. The hustle and bustle of modern day life has brought many of us to a quick fix attitude.This book is for those of you who are fed up; have looked at your life and your loved ones and realize
Re-Release! No longer back-listed. Return to the Olde Ways. The hustle and bustle of modern day life has brought many of us to a quick fix attitude.This book is for those of you who are fed up; have looked at your life and your loved ones and realize
Re-Release! No longer back-listed. Return to the Olde Ways. The hustle and bustle of modern day life has brought many of us to a quick fix attitude.This book is for those of you who are fed up; have looked at your life and your loved ones and realize
My daughter, Nashi Danielle, is eight years old; yet she is nothing short of a miracle in our eyes.
