Anat Baniel and other crys for hope for CP

Here is an article that deserves a read.  We have personal experience with Anat Baniel because she treated our daughter about 10 years ago.  Our experience says that $3,000 per week can probably be spent better elsewhere, however, for a very mild case of CP, any type of movement therapy can help. However, any type of physio therapy is just too little, too late for a child’s brain injury.  Hence “The Idea for a Cure”

If you have money to burn, I would give you a list of therapies, and include Anat on that list.   We spent our whole life savings on treatments in the first five years.  Did they help?  We have no way to tell, because we don’t know what Alissa would be with-out them, but she is still non-verbal, not walking on her own, still needs a g-tube for supplemental nutrition, etc.   If Anat reads this, my guess is that she would defend herself behind a cloak of me being too negative, but that is Anat’s defense mechanism… not mine.

Mom hopes book will lend A helping hand

Sales will help pay for her son’s treatment for cerebral palsy

By Randi Bjornstad

The Register-Guard

Published: (Monday, Jun 11, 2012 10:38AM) Midnight, June 11


Story photo and/or graphicJessie Kirk Photography

Shasta Kearns Moore and her husband, Matt Millard, sit with their sons, Malachi (left) and Jaden James. Malachi has cerebral palsy, and his treatment is expensive. His mom has written a children’s book and hopes sales will help pay for the medical expenses.

Story photoJessie Kirk Photography

Shasta Kearns Moore helps her son Malachi stand up. Malachi, who will turn 2 this month, has cerebral palsy.


Loving parents will do just about anything for their children’s health and welfare, and Shasta Kearns Moore and her husband, Matt Millard, are no exception.

The young couple have identical twin boys — Malachi and Jaden James, aka JJ — who will turn 2 years old on June 26.

Within weeks of their birth, Malachi, the older by five minutes, was diagnosed with cerebral palsy. Although quick-witted and verbal like his brother, the little boy cannot sit or stand unaided.

So far, Malachi has benefited substantially from the Anat Baniel Method of treatment, which uses gentle movement to help very young children with brain injuries — such as the strokes that lead to cerebral palsy — create new brain-body neural pathways while their nervous systems still are pliable.

The therapy is labor intensive and expensive. And like many health treatments that are not yet considered mainstream, ABM is not covered by insurance.

So Kearns Moore — who graduated from South Eugene High School in 2001, earned a degree in journalism at the University of Oregon five years later and then worked at newspapers in Tillamook and Portland — decided to combine her writing and parenting skills in a children’s board book. It’s called “Dark & Light: A Love Story for Babies … (and those who read to them).” Kearns Moore hopes it will help raise enough money to continue Malachi’s treatment.

“We have used up all of our savings and have had to use credit cards, but we are determined to get this therapy that we think is best for him until we can’t,” Kearns Moore said. “I’m hoping that people will love this book and will want to buy it and maybe even pledge a little more to help Malachi.”

Kearns Moore has set a deadline of June 27 to raise $5,000, the minimum cost of printing 500 board books that can stand up to the handling and teething of their young readers.

As sometimes happens these days, a self-published book that does well may be picked up by a major publisher. If that happens with “Dark & Light,” Kearns Moore will be delighted.

“The book will always be dedicated to Malachi and his needs,” she said. “But if it brought in enough money, we could start a foundation to help other babies with cerebral palsy get this special therapy.”

She got the idea for the book one day last fall when she was lying down to rest while the twins were napping.

“I was thinking about their favorite books, which are simple images with no text,” she said. “I began to think how I could create a book of my own with the same concept but with words that would have a deeper meaning that both children and adults could appreciate. I came up with the concept of ‘dark’ and ‘light’ and how they relate to each other in a variety of ways.”

Since she posted her book offer on Kickstarter.com, an online clearinghouse where people with creative projects can gain community financial support in exchange for a “reward” — such as a copy of Kearns Moore’s “Dark & Light” or her earlier grown-up novella, “A Twist of Fate” — well over 100 people have made donations approaching $4,000. The way Kickstarter works, if the goal isn’t reached, nobody pays.

If Kearns Moore reaches her goal and can order the first printing, the books will be shipped to their new owners in early August.

When she was first pregnant, her husband continually teased her that she was carrying twins, Kearns Moore recalled. “Every time I had serious morning sickness, he would say, ‘That’s because it’s for two babies.’ But when the midwives first listened for a heartbeat, they could only hear one.”

At five months, she had an ultrasound, “and the image immediately showed a baby, and there was a little circle by its feet. We said, ‘What is that circle?’ and the technician said, ‘That’s another baby.’ I was in shock. After all that teasing, Matt was right.”

After her exam was completed, “about 16 medical professionals came in and said the babies probably wouldn’t survive because I had a too-short cervix,” Kearns Moore said. She went home and began what became 10 weeks of bed rest. The day before she had carried the babies for 28 weeks, contractions started, leading to a two-week stay in the hospital until the babies were born — without Caesarean section — just before the 30-week mark in the normal 40-week gestation.

At first everything seemed fine, but a week later a scan showed a small spot of blood on Malachi’s brain. The next week, the ventricles of his heart appeared swollen, and at the next check-up, doctors diagnosed cerebral palsy.

“I didn’t know anything about CP at the beginning, but I started doing a lot of research,” Kearns Moore said. She also started a blog, to share her own essays, pictures and poems about living with twins, one with and one without cerebral palsy, and share information about the Anat Baniel Method.

“It’s really a compelling way of looking at brain injuries in children,” Kearns Moore said, although the therapy applies to people of all ages with brain-related conditions such as stroke, Parkinson’s disease and multiple sclerosis. “The traditional methodology with kids with CP focuses on strengthening muscles, but ABM is the opposite — it’s brain-focused. It’s very slow and very gentle and works on the relationship between what the brain can do and what the body can do and supports the child’s ability to learn.”

Kearns Moore and her husband have taken Malachi to San Rafael, Calif., the headquarters of the Anat Baniel Method, for a weeklong intensive therapy, which costs $3,000. “When we’re there, we do two classes a day, each for an hour, with the therapists, who use some yogalike therapy and other movements,” she said. “It’s hard to see what’s going on, because it’s all happening in the brain. But after the first lesson, I couldn’t believe the change in Malachi — his muscles were so much looser, his ability to move was completely different.”

Continuing therapy, which costs about $700 per month, is available in Portland, where there are at least two certified Anat Baniel Method practitioners.

“I don’t know where Malachi is on the CP spectrum, but from what I’ve seen with this therapy, I’m optimistic — I think the results from this therapy are a research study waiting to happen,” Kearns Moore said. “Malachi’s fine motor skills are getting better all the time, and he speaks about as well as JJ. It’s the gross motor skills that lag. But we’re just thankful that he is verbal and such a joy to be around.”

http://www.registerguard.com/web/livinghealthfitness/28193566-41/malachi-kearns-moore-book-cerebral.html.csp

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