November - 2016

Walk-N-Rolling With Spina Bifida

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What EXACTLY is Spina Bifida?

WHEELCHAIR AIR TRAVEL – “QUAD” STYLE

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Paul-N-Salini

Paul-N-Salini

My name is Salini, I met Paul 3 years ago on a website call Badoo, we started out talking as friends, he told me a couple days after that he uses a wheelchair to get around and he has Spina Bifida and Hydrocephalus. We continue talking and eventually feelings started to develop. I did have to the back of my head if I was prepared to handle a relationship like this, where things would be different and I would have to adjust my life accordingly to suit Paul's needs. I decided t

Look At Me

Look At Me

Look At Me When you look at me, what do you see? Just someone in a wheelchair? Someone with a broken body? Look at me. I'm a woman I'm a daughter I'm a sister I'm an aunt Look at me. I have emotions. I laugh I cry I scream Look at me. I see you. I know you're curious I know you have questions You avert your eyes so I won't notice the stares Look at me. I want to get to know you I want to be your friend We were all created by one God Don't ignore me

Skye

Skye

Hi !My name is Celeste A. Daniels, author and founder of Skyewaters.com. I was diagnosed with a brain condition called Hydrocephalus at the age of 29 after contracting viral Meningitis at the age of 15 and then again at age 22, which left me with chronic daily headaches. I decided to get myself checked out and after having a CT scan, Mild Hydrocephalus due to Acqueductal stenosis was the determining cause of all my pain. It was a struggle with doctors at that point in time be

Kat

Kat

My name is Katherine Magnoli. I am thirty-three years old. I live in Sunny Isles Beach, Florida. I have Spina Bifida Myelomeningocele. Spina Bifida has made me a stronger person, So in a way, I am grateful to my disability because it has shaped me into the person I am today. Growing up with Spina Bifida has had many ups and downs. As a young child, I was surrounded by children similar to myself. Then as a preteen, adolescent, and even young adult, I was the only person with a

Cruisin Spina Bifida

Cruisin Spina Bifida

Hi my name is Ashleigh Johnson I was asked to give a little story about my life with Spina bifida. Here it goes, first of all I am the baby of the family of two kids. When I was born, I was a very sick baby for a while. I was in and out out of the hospital for most of my infant life but I stayed strong and fought for my life when the doctors didn't think I would make it past my second birthday. Well I proved them wrong! Anyways, when I passed the age of two I knew I had a cha

Joshua’s Journey

Joshua’s Journey

Joshua Dickinson a 30 year old man from Hamilton Ohio has myelomeningocele Spina Bifida, Hydrocephalus and is incontinent . Because of paralysis from Spina Bifida , Joshua uses a manual Quickie XL 1 wheelchair to get around , Josh takes Ditropan every day to control his Neurogenic bladder and wears depends in case of accidents, Depakote and Carbatrol to treat seizures. In his family , Joshua is the middle child of 6. There are 3 older and 3 younger . While in school Joshua

Love Dancing

Love Dancing

Two years ago, I had the pleasure of meeting Maritza Garcia Rodriguez at a local LA Fitness during a Zumba class. Maritza Garcia Rodriguez, 39 years of age from Deltona, Florida was born with Muscular Dystrophy. What is Muscular Dystrophy? It is a group of diseases that cause progressive weakness and loss of muscle mass with voluntarily muscles. There are nine major forms and it can appear during infancy up to middle- age or later. Maritza does not let Muscular Dystrophy get

Rolling With Spina Bifida

Rolling With Spina Bifida

Rolling With Spina Bifida is not all about wheelchairs, Depends, medicines and doctor appointments. In my eyes, having Spina Bifida ( Spina Bifida is the most common permanently disabling birth defect in the United States. Spina Bifida literally means "split spine.") is a blessing. A lot of you may be reading this and asking your self "did she really say Spina Bifida was a blessing?", "How can Spina Bifida be a blessing?" Spina Bifida is a blessing to me because I am able

Reality TV to custom wheelchairs - Taking metal fabrication for a ride

Reality TV to custom wheelchairs - Taking metal fabrication for a ride

At the age of only 14, "custom fabrication" was already practically Sean Mahaney's middle name. By the time he graduated from high school he had too much business to continue working out of his home garage and had to open his own shop. From those early entrepreneurial days to now, Sean has worked in a number of shops on a variety of projects - from reality shows (Remember Discovery Channel's "Street Customs?") to mini trucks (the original Master Image Customs) - and has made

My Life With Ullrich Congenital Muscular Dystrophy

My Life With Ullrich Congenital Muscular Dystrophy

Back in October I promised that at a later date I would get to the ins and outs of how my condition affects me. I think it’s about time I do just that in order for you to learn more about me and the impact UCMD has had on me personally. Alright, well I have a rare, degenerative condition called Ullrich Congenital Muscular Dystrophy. The congenital part means that it’s present from birth. UCMD is just one form of Muscular Dystrophy, of which there are many. In fact, Ullrich CM

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