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LindaRacine
07-09-2009, 08:47 PM
http://www.news.com.au/heraldsun/story/0,21985,25758130-661,00.html


Landmark spinal surgery gives Amber Jepsen hope
Article from: Herald Sun

Grant McArthur

July 10, 2009 12:00am

A REVOLUTIONARY spine-stapling operation is helping young Amber Jepsen fight a crippling condition and dream of one day walking unaided.

Royal Children's Hospital surgeons placed staples along one side of the six-year-old's spine to fight her worsening scoliosis - which has curved her spine at a 49 degree angle and could have crippled her as she grows.

Without the operation, performed by the hospital for only the second time ever, Amber's only options were surgery every six months or wearing a waist-to-neck, body-cast brace 23 hours a day for the next six years, which would stop her from moving and playing at her Carlsruhe farm home.

Instead, she is playing with her pony, Honey, and learning to kick a football a week after the keyhole surgery.

"It means I don't have to wear a brace and I can play with my animals," she said.

Parents Shelly and Brad said the surgery had made a world of difference.

"As soon as she came out of the surgeon's office she said, 'Give me an operation. I won't wear that brace'," Ms Jepsen said.

"The brace would have been almost impossible for us to live with.

"I would have had to fight with her to get it on, it would have made her more different from her friends, hot in summer, unable to sleep, and it would have made moving hard.

"They don't know if she will be able to stand, but we are hoping that this will happen and she can take steps on her own. She can play Wii games now, standing in her frame, and that is really exciting.

"And I am really hoping she can spend a lot more time in her walker and be able to do more things independently."

At three, Amber was diagnosed with severe Charcot-Marie-Tooth disease, a hereditary ailment causing weak body muscles, especially in legs and ankles.

After surgery to repair her hips, a growth spurt showed Amber had scoliosis and her spine was curving dangerously.

Spine stapling surgery can only be done on curves of less than 50 degrees.

With the most recent scans showing Amber's spine had reached a 49 degree twist, orthopaedic surgeon Michael Johnson took action.

He placed six staples to link the growth plates of vertebrae along the outside of the curve on her spine to stop the spine's right side growing too quickly and help the slow-growing left side catch up.

The surgery will only suit one or two Victorian cases a year. Because it is intended to protect and correct the spine for up to eight years, the extent of its success is unknown.

But watching his daughter improve and knowing her fighting spirit, Mr Jepsen said the sky was the limit for Amber.

"Her attitude is that she will have a crack at anything," he said.

"She thinks Richmond needs help kicking goals so she wants to get out there."

Lorraine 1966
07-09-2009, 11:28 PM
Thank you Linda, we are catching up at last which is great.

Lorraine.

nate03
07-10-2009, 05:18 AM
Just FYI, I have been in correspondence over the past year and a half with a Mom whose daughter had VBS with Dr. Askin in Brisbane in April 2008. She told me that prior to her daughter's surgery, he had done 10 in the past 18 months.

-Cara

Snoopy
07-10-2009, 06:23 AM
At three, Amber was diagnosed with severe Charcot-Marie-Tooth disease, a hereditary ailment causing weak body muscles, especially in legs and ankles.




Thanks Linda. This articles also helps bring attention to Charcot-Marie-Tooth (CMT) which a few of us have discussed on this forum.


Mary Lou