You see, when she was born in 1956, ACM was a� mystery condition to the medical profession and now 40 some years later, the medical profession still considers it a mystery condition, still experiments and still does not know how to handle or treat it successfully.
After 3 days of intensive labor and finally determining that her head was stubbornly locked in my womb, the Drs. wished they could do a C Section but they determined it was to late, instead they injected me with a spinal tap and a forcep breech (face first) birth was necessarily performed.
When they brought her to me she instantly starting screaming at the top of her lungs, turned beet red and held her breath for what seemed an excruciating loooong panicky precious moment.� My nurse rushed in, took one look at her and snatched her away.� Shortly after I was told they had placed my baby in a secluded incubator where she remained for the first 2 weeks of her life, they performed multiple brain taps to remove excess brain fluid and relieve pressure. They said she also had a dislocated hip from the birth process.
I was bedridden from birth complications but with repeated pleadings my Dr. finally gave permission for me to visit during that 2 weeks. This was done through the nursery viewing window only. She laid so helplessly tiny but peaceful with her head elevated in a downward position to help relieve all that brain pressure.
Then the good news, she was finally ready to make her entrance and join her family.
She was a bit of a fussy small infant but her Dr. assured me there was nothing to worry about, that she would outgrow holding her breath and crying all the time.
She grew into a wonderful, intelligient, loving, strong minded, fiesty, independent, and obedient child. One of her primary school teachers described her as an individualist.
God truly does have His way of providing.She would tell me it was going to rain before it did. How did she know? She also had degenerative bone disease and beginning stages of Spina Bifida.
The first time she got a cold, she was a teenager in rehab and barely knew how to blow her nose. We had so many good laughs about that one too.
Even though she had a rocky start, her childhood Dr. diagnosed her as a perfectly healthy child, but her complaints were medically legitimate. No one ever suspected or noticed her neurological symptoms.
Arnold Chiari Malformation is uncurable, like many other ailments, it can only be controlled, it is believed it may be congenital.� It's deceitful, and like a vicious cycle, it creates primary plus secondary problems and can flair up when you least expect it.
At 12, she began to limp and the best pediatrician and orthopedist Drs. in our area said she would be in a wheel chair by the time she was 21 unless she had hip surgery for that dislocated hip.�The dislocated hip from birth had fused into it's dislocated position. My parents and I took her to Childrens Hospital in Phila., Pa. where Dr. Irani placed her in traction to try and dislodge her hip and have bone graft surgery performed.
From age 13 to 15 she resided and kept up with her schooling in a body cast from her waist down at Betty Bacharach Rehabilitation Hospital in Longport, NJ.
When she came home she was unable to attend high school in our small town since it was a 2 floor school with no elevator so she used crutches, so arrangements were made with our school board for home tutors.
With all she'd been through, she graduated with the same classmates she went to grammar school with.
Her full blown ACM apparently flaired up when she was 16 years old after someone placed a dangerous substance in a coke she drank at a basketball game she attended in Wildwood N.J.
After graduation she moved to North Carolina to spend time with her father and while there made an appointment at Duke University in Durham, No. Carolina for hopefully her much needed total hip replacement performed.
Dr. Wilfong at Duke Univ. noticed that she had a nystigma of her right eye and tests were performed. Those tests showed a cyst had developed at the base of her brain...Arnold Chiari Malformation, ACM. I stood by and watched while her beautiful long brown hair was shaved off. Her first shunt was inserted to drain that cyst. The ventricle in her skull kept plugging up or her shunts would dislodge. Over the years many many shunts and shunt revisions did not control her ACM.
When she was strong enough she came home to N.J. by bus. With her shaved head, wearing her favorite outfit (jeans with baggy t-shirt) we figured it was a safe trip as she looked like a young man. My mothers heart was a wreck waiting for that bus to pull in at the bus depot in Atlantic City N.J. We giggled and giggled over that episode so many times.
Over time, she began to develope Spinal Bifida, a severe curvature of her spine.
Just before her 26th birthday, she fell down a flight of stairs severly hitting her head which caused serious hemotoma, dislodging her shunt.
A new shunt was inserted but the Dr.s had to redo that surgery to place a larger shunt.� In the recovery room she suffered a stroke. After her stroke, she needed to learn how to talk and walk again.� The stroke paralyzed her entire left side from her shoulder down. With extensive rehab. she learned how to talk and walk again.
She had pigskin graft surgery from severe burns on both her legs.� She was trying to make popcorn from her wheelchair!� Her wheel chair or the use of one hand never stopped her from doing anything she set her mind on doing.
(which is one of the points of this writing.� God gives us strength's to overcome any of lifes obstacles.)When she was 29, she moved herself and her 3 yr. old son into thier own cottage in the country which her church located for her. Except for help doing major spring cleaning, she took care of her home and 3 yr. old son.
On a blind date setup for one of her church friends, she met and married her legally blind hubby Rene who became her legs and she his eyes. (God provides!)
She is a 1956 graduate of Ocean City High School, NJ, also a 1985, 1986, 1987 graduate from N.J. Garden State Bible School.
In 1994, she enrolled in Atlantic County Community College, N.J., for her degree in Sociology.
June loved the mountains. Convinced the dryer weather in Colorado would be better for her aching bones and her breathing problems, June made arrangements with the help of her sister Gayle, who already lives in Colorado,to pack her hubby and son up and go west by train in Aug., 1998.
After they got settled, June was hired for the first time in her life as a "peer advocate" for the Colorado Disability Group.
Rene began computer courses for the blind so he could work for Colorado's RTD, public bus transportation. �His desire was to help other physically challenged including the blind to be independent with thier public transportation.
One day a few years ago I did a websearch and found an ACM support group. WACMA
When I told Juneann about it, she eagerly joined and wasted no time making some wonderful friends. Her friends loyally stayed close to her side and went the extra mile helping in real life more than once when she needed help after they moved to Colorado.
click on red heart. 
Disclaimer: A lot of graphics you might find here were collected from about 1998 and fortunately stored onto floppy disks. Unfortunately since my computer has changed several times since then, I have searched and not been able to track some of those urls down again. Those that I do know where they came from, I make sure credit is given. Apologies are extended for any inconvenience. Now, if you do know where they "originally" came from, please let me know.