MEET OUR MENTORS

Living with a disability presents a ton of challenges. Life can be hard, and not knowing what our future holds can be daunting. I was lucky to have grown up around so many amazing disabled people. However, not many people are able to have that experience, and often, people never get to meet another disabled person in their lifetime.

We're here to help you every step of the way. Through the good and the bad, and the highs and lows of life. If you're looking to connect with someone like you, or you just want to meet new people, we're here for you!

RACHEL GROSS - @RIIZZYRAY

Nemaline Rod Myopathy

Hi! I'm sure you all know me by now, so i'll just give you a short summary. I was born with a rare genetic condition called Nemaline Rod Myopathy. This affects all of my muscles, and requires me to rely on personal assistants to live independently. I am a pretty typical 20-something-year-old just trying to live her best life. I am an open book and love to educate and connect with people.

ZASIA DAVIS - @X_ZASIALOVEE_X

Osteogenisis Imperfecta

Hey everyone! My name is Zasia Davis and I am a 24 year old college student/mother. I have a disability called Osteogenesis Imperfecta type 3/4 which is a genetic brittle bone disease. I was born and raised in NY and my mom also has O.I. Type 3. My son Bryson is 3 years old and did not inherit the disease. I’ve been through my fair share of discrimination and have experienced a lot of things throughout my life. I’ve traveled internationally to Europe twice and I have been working since I was 15. I also drive and have my license. I know what it’s like to constantly be told that I can’t or shouldn’t do something but I have never let anyone’s words or opinions stop me from living my best life lol. I am here to help anyone who feels they need someone to look up to or someone to help them get through any and all hard times. All I want to do is help someone in need and let them know that they can do ANYTHING they put their minds to. The sky is the limit for us and I just want everyone to succeed in any goals or aspirations they have!

KARA BOWLES - @LLAMA_MAMA19

chronic invisible illnesses

Hi my name is Kara! I have chronic invisible illnesses and am here to listen, empathise, and help. I currently am diagnosed with celiac, fibromyalgia, endometriosis, hashimotos, aortic valve deviation, pituitary tumour, and some more! I live with my fiancé and our one year old son. I currently do not work but have navigated working with illness. Also I’m here to shed light on being sick as a parent.

SHANNON MURPHY - @28SHADESOFSHAY

Ulcerative Colitis, Chron's Disease, POTS, other chronic illnesses

Hi everyone! I’m Shannon! I’m a 23 year old with a permanent ileostomy bag! My journey started with Ulcerative Colitis, where I lost my large intestine and had a temporary ileostomy. Years later my small intestine became ill with Crohn’s disease so I was destined for another temporary bag... although things got crazy and due to going septic and being in a coma, the second temporary ileostomy had to become permanent! Now years later I’ve been deemed in Crohn’s remission and I’m just navigating life with POTS disease and other new chronic illnesses, and learning self love with my new permanent body! I’m an open book and love to share stories, feel free to talk to me!!!

SABRINA FAITH - @HEYSABRINAFAITH

Spinal Cord Injury

hi! i’m Sabrina, a twenty-something disabled creator from the midwest. I am engaged to an amazing human & we are expecting our first child in 2021! i believe all bodies are good bodies & am here for whatever you may need on your journey.

MICHELLE JOO - @APRUDENTWILLOW

Recessive Titinopathy

Hi, my name is Michelle and I reside in South Korea. I am a sociology student with recessive titinopathy. My mutations are rare so I still do not have a subtype. I am passionate about drawing and advocating about rare diseases/mental health. I like to hang out with my dogs and take care of my succulents.

JESSICA POCHE

Nemaline Myopathy

Hello! My name is Jessica. I’m 25 years old and was born with Nemaline Myopathy. I live on my own in Brooklyn, NY and work as a client advisor for a fashion brand through a chat platform. I love traveling, photography, music and food. Helping people fuels me and I’m open to speak about anything!

ALYSSA HIGGINS - @WHEEL.LIFE.IN.THE.WHEEL.WORLD

Spinal Cord Injury

Hey hey! My name is Alyssa, I have a spinal cord injury due to my doctor using forceps but I’ve been proving doctors and nurses wrong from day one 


I’m married a year now and a fur mom! I live my life just like everyone else and I love it!

AXYA HAUGHTON - @AX.HAU

Cerebral Palsy

I’m Axya Haughton, I have Cerebral Palsy Quadriplegia Ataxic. Cerebral Palsy is a well known physical disability, over 200,000 children/adults are diagnosed once a year. They’re so many types of CP, a person can go unnoticeable for years.  Ataxic Cerebral Palsy means having a hard time controlling movements. My movements are shaky and struggles with precise movements, such as writing and grasping small objects. Ataxic CP can affect the hands, arms, legs, feet, eyes and even speech. Cerebral Palsy (CP) has a wide range of abilities but it’s still a lifelong disability. CP is not a disease, our society think it is but actually it’s a brain disorder before birth.  I was always taught to try harder and that word “CAN’T” isn’t in my vocabulary lol. So I had physical, occupational massage and speech therapy for about 19 years of my life, I got stronger - I mean, a lot stronger. Most people with my type of disability can’t even do half of the things I do by theirselves, and I’m so grateful that I can. Having a disability is difficult but it’s opened my eyes to so many things. I’m 23 years old, living on my own in NY, got a  Bachelors of Fine Arts (BFA), from SUNY Old Westbury and living my best life.

STEPHANIE CHICAS - @STEPHCARMENC

Congenital Muscular Dystrophy

Hey, my name is Stephanie. I’m 26, a student, sister, friend, dance fitness/art/wine/taco lover, and i happen to have a rare muscle disease. When I was 12 years old, I was rushed to the hospital because I had trouble breathing and starting going pale. I spent one month in the hospital and one month in a rehabilitation center. A case of pneumonia, having my lung collapsed, needing invasive breathing support, and a muscle biopsy lead doctors to my diagnosis of the rare congenital muscular dystrophy. Everything happened so fast and I felt like I missed out on being a teenager. But then again, even as a child, I was always the sincere, strong, and determined person I am today. So maybe I was made for this life ♥️  
It’s been 13 years since that life changing day. I have 2 titanium rods and 17 screws surrounding my spine, I’m battling against 2-3 viral/bacterial infections a year, hospital admission once a year, and experiencing symptoms every day. Despite the fatigue, shortness of breath, migraines, muscle wasting/spasms, nausea, dizzy spells, back/neck pain, and brain fog - I am the most confident i’ve ever been. I would not have this “never give up” drive if it weren’t for my killer support system and most importantly my mom. Like of my favorite quotes says “I cannot let what I cannot do get in the way of what I can do.”

KELLIE CUSACK - @KELLIELYNNE99

Spinal Muscular Atrophy

Hi there! I'm Kellie Cusack, I'm 21 and jersey girl. I have Spinal Muscular Atrophy type 2! I dye my hair wayyyy too much. I'm a mental health and disability advocate! I've been through it all mentally, and I'm here if you need a friend! I'm a closeted bisexual who loves animals, pastels, rainbows, music, anime, and gaming. You may know me from my Instagram, (@KellieLynne99) my blog (forthewildwarrior on word press!) or on SMA news today! I think that's everything! I'm excited to make new online friends who get it!

SHELBY VANVLIET - @SHELBS_VANVLIET

Titinopathy

Hi! My name is Shelby VanVliet and I have titinopothy. I study neuroscience and French at the University of Pittsburgh. For college, I moved 5hrs away from home and had to manage my own care through a nursing agency. On campus, I am involved in disability activism through poster campaigns and advisory panels to the Chancellor. I’d be happy to help with any advice you need on living independently/managing your own care. I’m also happy just to chat:)

JESI STRACHAM - @JESISTRACHAM

Spinal Cord Injury

Jesi Stracham, is a wheelchair user on a mission to help individuals see the opportunity in their obstacles. She is the founder of Wheel With Me Foundation, the owner of Wheel With Me Consulting, and a full time student. Through her own struggles she works to teach individuals the power of our mindset.

NAOMIE MONESTIME - @HEYOMAYO

Type 1 Diabetes

Heyy there! My name is Naomie, and have lived with Type 1 diabetes for 15 years. Life with an invisible illness is a real challenge. You deal with drastic symptoms at different points of the day without much indication to the people around you. An invisible illness can make you feel isolated. I have learned that making your own community can alleviate some the stresses, the highs and lows of living with any chronic illness.
Having a community of support has shifted the way that I deal with type 1 diabetes, the devices i wear to keep me alive and all the physical, mental and emotional challenges ive had to face over the years. I hope to help you in any way I can for you to do the same.😁

 
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