Amara | CaringBridge

Amara’s Story
Welcomed to my beautifully crazy journey of learning to dance with multiple brain injuries. No car, mosquito or any rare disease can take my love of life, people, art, and nature away 💃🤗💚🎶🎨

My  health journey began after sustaining a severe traumatic brain injury from being hit by a car June 1st 2008. In Fall 2017, I went from recieving my professional degree for recreational therapy, attending grad school for expressive arts, working two part time jobs, performing and volunteering on weekends to fighting to live the unknown in the medical world. Now I am on a new journey with a serious neurological disorder that regressed what started withwith viral/allergy symptoms like fatigue, loosing voice, cough, physical fatigue and loss of appetite. Having the previous TBI and conditions make it more difficult, yet gives me more resilency. My life has changed yet again not in an instant but slow deterioration of instances that continued. It will be a long journey, of tests, doctors, treatment and therapy!

As of March 21st I was been at Jersey Shore hospital for 13 days and care one subacute for 35 days , Feb 2nd came to SUNY Downstate Hospital for 33 days where I was diagnosed and treated for autoimmune enchephalitis(hashimotos enchephaty)& with possibility of west nile neuroinvasive disease(tested positive). The diagnosis is not 100% but its most likely, testing for other ataxias continues. March 7th I came to Good Sheppard Rehabilitation in Allentown PA, discharge planned April 24th to go home to my newly accessible Howell NJ home I have lived in for over 10 years.

At first in November, doctors suspected a thyroid or  endocrine disorder due to my symptoms mimicing hypothyroidism and having high thyroid antibody. I was diagnosed with a neurological voice disorder          Spasmodic Dysphonia but knew it was more then that. Then the Jersey Shore hospital stay doctors said my condition was neuuromuscular because of my progressive muscle weakness and hypotonia. Now doctors discovered my illness is from the Central Nervous System; a cerebellar ataxia: condition effecting whole body coordination. I have  quadriparesis, severe dysphagia(g-tube fed, and difficulty swallowing salivia), dropped head syndrome, diaphragm spasms, with my inital symptoms of dysphonia and dysarthia. Starting in May I am being treated for untreated lymes, inactive infection. West Nile still most likely cause of symptoms, doctors still ruling out other conditions. 

‎Post accident I have dedicated my life ability advocate fighting for those who have disabilities and rare diseases, so now I was giving this course to enhance my dance!We are using this site to keep family and friends updated in one place. I greatly appreciate your support and words of hope and encouragement. Thanks for reading this blog gives me a chance to independently express my self in a voice difficult to communicate externally.

Thank you... Remember to DANCE
Discover Accomplish Nourush Create Embrace

I have a super strong support system including my mom Lori, dad Larry, two brothers Lawrence and Robert, 3 cats, my cousin Jessica, and several close friends including Sophia "my homie" who hangouts out and helps me with care a few days a week. 

I started a non profit with my family in 2011 called Riccio Pick Me Ups in which plan to continue!

Www.ricciopickmeup.org

Newest Update

Journal entry by Amara Riccio

Believe it or not...


It's real

It's a freak

How can it be so unique

Be..hind the awe

You leave the some 

Believe that the freak is still awesome💚

 

So today besides phone calls with Hopkins we were hospital free! We went to the Ripley's believe it or not museum. I love seeing the eclectic art, puzzling rarity of things and people. It's just difficult because  though I have good vision my floppy neck and uncoordinated arms prevent me from seeing and experiencing things. I feel like I'm a tilted freak, whether anyone  believes it or not. All "freaky" people skinnest man, tallest person....had an underlying extremely rate medical condition. I just took a nap and we are going to a met vs orioles game 

 

Please pray for all those fighting with wide array of health conditions especially rare and complicated, experiencing all frustrations we are and even more. 

 

So I believe...in unexplainable... HOPE. Keeping the faith 🙏Much love

Comments Hide comments

Can you help power Amara’s site?

A $30 donation powers a site like Amara’s for one month. Help keep CaringBridge online for them and for you.

Show Your Support

See the Ways to Help page to get even more involved.

Personal Fundraiser

Support Links

Helpful Tasks

Thoughts & Well Wishes

ARTHUR ZELTSER | Mar 24, 2018

Hi Amara,

This is Arthur, if you recall we met back in February on the same floor floor of the SUNY Downstate Medical Center. We spoke of the arts for a short period of time until my father and I had to leave your lovely, diverse room (it sure seemed more euphoric than my room with all those colors). We have spoken just a few hours prior to my discharge, that is why I did not have a chance to bid you goodbye.

Last Tuesday I spoke to your good-hearted father during my treatment session and he provided me with your information on this site. Since the last time I saw you I recalled how lucky you are to maintain such a spirit of optimism. You indeed can teach many individuals to stay strong, including myself. Your documented life journey has indeed inspired me. I am delighted to know that at least you get to spend time at home with your family. Arguably the greatest gift of all is to be alive, especially when one maintains the most paramount support system of all - family. I am certain that both of us are grateful to maintain those bounds.

So you dance? How delightful. In my high school years I took ballroom dancing lessons in waltz and tango. I still maintain those skills and am currently reviewing Baroque dance because I am enamored with the Baroque period itself. Please continue to keep the community updated on your journey. We are excited to see where you shall proceed following your discharge. For now, keep up the optimism, time will fly by with a smile! Hope to hear from you soon.

Love,
Arthur

heart 1 Heart
SVG_Icons_Back_To_Top
Top