This Blog is to Unite Families Links in one Place to Stop Disease So thanks to a friend on fb, I decided to name it from The Children’s Book I wrote when in abt 3rd or 4th grade.
The Sad Little Ball….
Hello, My name is Kathleen, and this is my story. My grand-daughter has Hydrocephalus (birth defect within the brain), Nastagmus & optic nerve atrophy (causing vision impairment), also CVI, and Scoliosis. She wears a back brace to help slow the growth rate of her spine curvature. We have to take as many preventative measures as possible as she will need surgery if we are unable to slow the rate down. The Dr.’s are hopeful to wait until she is ten years old to fuse off her spine. Rian is special needs with autism tendancies. She has been through two surgeries by one and half month old. Soon she will have to have AFO’s for her ankle and wear eye glasses to help assist her with some of her vision impairment. Rian had what is called….Endoscopic Third Ventriculostomy. This was a new procedure and Thank GOD as she has NO SHUNT !! Here are just a few links that will help in understanding what she has or is going through. If I were speaking to a doctor….the one thing I would have liked to have seen different, is this surgery being done before the blue-baby as I believe she had what was a stoke in my arms the first time holding her. I am not in any way a medical professional, however, my thinking is, that had this surgery been done right after birth if at all possible….maybe she may have never had lack of oxygen. But things happen for a reason and I do love her. I just pray for her future as anyone would. For her to have her independence. At this juncture, I do not see that happening. But I do remain hopeful and have faith and GODs WILL BE DONE !! I would never have started this had it not been for my two grandaughter angels. These girls continue to teach more than I had learned in a lifetime !!!! The following links help to understand Rian’s conditions. Rian was born with all of the following, of coarse not all diagnosed immediately as it appears medical specialists etc are learning more about these. Please note: to learn more, google and learn. There is so much information now on the internet. It has helped me to understand more and will always be learning and educating myself as long as my brain will allow.
So much more needs to be done and understood. But doing it right is more important !! In my opinion, Quality medicine is much more important than quanity. This world used to focus on quality more and I did see a change from 1960s to current focusing more on quantity rather than quality. I pray someday we learn to revert back to quality of lives being the priority. Emedicine has been a favorite site of mine for years…..Live and Learn and GOD Bless OUR Children !! May the odds of getting these disease’s be less and not more, before we lose one more child to a disease. May we someday give our children a better quality of life than ours.
Optic Nerve Atrophy http://www.blindbabies.org/factsheet_ona.htm
Our Sincere Thank You to Michael Illions and his Wife
and Friends for Battling to get Senate to Approve the National Hydrocephalus Awareness Month!! See Below!!
My step grand-daughter Allyson has “Spinal Muscular Atrophy” Type One.
The disease, Spinal Muscular Atrophy (SMA), the number one genetic killer of children under the age of two, is a group of inherited and often fatal diseases that destroy the nerves controlling voluntary muscle movement, which affects crawling, walking, head and neck control and even swallowing. Her beautiful Mind is un-affected! THERE IS NO CURE, BUT RESEARCH PROVIDES HOPE.
Any Assistance Is Appreciated:
Mom’s Information – Tina Krajewski: tina@AngelAlly.com 773-283-7211Donations can be made to Angel Allyson Fund NFP – any TCF Bank. Mailing Address : 3614 N. New England – Chicago, IL 60634
or donate to: http://curesma.org/ you can also visit site: http://angelally.wordpress.com/
Some Favorite Sayings:
If you think aging is not your issue, it will be !!
We grow old too fast, and we learn too late !!