wondergirlsaida

[wondergirlsaida]

I am thankful that I can use my voice and my platform to help so many people

[wondergirlsaida]

I Love doing everything I can to help people and advocate for all!!!!

[wondergirlsaida]

have overcame lots of challenges over the years growing up with my asthma and my allergies

I have received lots of medical care and treatments for my asthma I have had many stays in the hospital due to my asthma I have had pneumonia and bronchitis due to my asthma

I do my nebulizer treatments to help me with my asthma

I don’t let my Asthma stop me from doing anything in my life I have a wonderful medical team helping me and I know if I have a hard time I can reach out for help and support.

Another challenge for me is my allergies I have different types of Allergies I have Food Allergies, Drug Allergies and insect allergies

I have dealt with fighting through Anaphylaxis and so much more etc due to my allergies.

It has been a very overwhelming and stressful journey for me I don’t let my allergies stop me from doing anything in my life

I travel and go everywhere with my Epinephrine also known as my EpiPen I am using my voice to help raise awareness and help educate others all about Asthma and Allergies.

I love helping others

I learned how to manage these chronic conditions with all my strength and power I know if things get really difficult I can reach out to my medical team, my mother, my friends and so many more etc

I am part of many support services and organizations

My goal is to educate people what life is like living with disabilities, rare diseases and dealing with Asthma and Allergies.

Please know and always remember you are not alone

#staystrong

[wondergirlsaida]

Hello everyone my name is saida and I have Dysarthria, Stuttering and Apraxia I also have Autism, Sensory Processing Disorder, Cerebral Palsy(CP) , Neuromuscular Diseases (NMD) and other chronic medical conditions and chronic disabilities.

Growing up I didn’t know how to talk at all I was delayed in everything

I was completely nonverbal I was always babbling and using sign language every time my mother would talk to me I had no way to communicate with her using my words.

I went through numerous speech therapists and pathologists and none of them did not understand me and my mother took me to a speech therapist she found for me and I learned a lot from her

My mother told my speech therapist about myself and how I was born with my extremely rare genetic disease called Partial Trisomy 8q Duplication Syndrome and it had a huge impact on me in all ways.

When I turned 5 years old I was able to talk to my mother

As I got older I continued to get help and care I continued to have lots of communication and language challenges

I ended up dealing with my stuttering and Dysarthria as well as my Apraxia.

Fast forward to myself now at 27 years old I am receiving better help for my Apraxia and all of my other conditions I have

I am a Podcaster, I am a Beauty Pageant Queen, Performing Artist, College Student, Writer, Author, National Disability Advocate and Activist, National Rare Disease Advocate and Activist and so much more etc.

I learned how to advocate for not only myself but for so many other people who are living with Apraxia and many more other chronic conditions I am thankful I was able to get myself help I needed I want to help others and giveback to those who are struggling

I am proud to be the woman I am today I learned so much from my mother she helped me get through everything with so much power

she helped me get through everything

I am here to support everyone who have Apraxia and other disabilities please know you are not alone

Stay Strong You Got This!

[wondergirlsaida]

Growing up due to my genetic disease my Partial Trisomy 8q Duplication Syndrome which affects me severely I have always struggled constantly so much with muscle weakness, stiffness, weakness in my jaw muscles, numbness, tingling, motor skills difficulties, difficulties with dressing, eating, feeding, my mobility, my speech and Language and so much more etc.

I also struggle with my walking and movements I deal with uncontrolled movements and tremors I wear Ankle Foot Orthotics (AFO) Braces and I also have Forearm Crutches as well to help me with my Neuromuscular Diseases (NMD) and also my Cerebral Palsy (CP)

I live with Congenital Muscular Dystrophy (CMD) it is a chronic medical condition that I have lived with my whole life every since I was born it is due to my extremely rare genetic disease called Partial Trisomy 8q Duplication Syndrome

I also have my Cerebral Palsy due to my genetic disease as well

I receive lots of different therapies and treatments to help me with my chronic complex medical conditions

I have a wonderful, brilliant, remarkable neuromuscular doctor who is taking excellent care of me and supporting me with everything.

I am thankful to be receiving help for my eating and feeding as well as help with knowing how to handle hold my cups, glasses, utensils and bags without dropping things and holding everything crooked due to my neuromuscular diseases.

I am part of numerous support organizations and programs to help me I am using my voice to help others and advocate for all of those who have neuromuscular diseases and Congenital Muscular Dystrophy (CMD) both

I will not let my CMD stop me from doing anything in my life I am going to continue to fight and battle through all of the struggles I am determined to make everything work it might take me a long time to get through what I am doing but I am always determined to get through everything I know I can always reach out for help and I use all the wonderful helpful tools I learned to help me get through my difficulties.

I am forever thankful and grateful to be part of the wonderful Muscular Dystrophy Association (MDA) organization it is a wonderful organization and they have so many wonderful support services I love them so much

I am happy to have my life back thanks to my fantastic neuromuscular doctor!!!

[wondergirlsaida]

I love doing everything I can to help people and advocate for all

I am extremely passionate about making the world a better place for all

Everyone deserves lots of Love and support!!!

[wondergirlsaida]

I am extremely proud to be a disabled person, a medically fragile person and a Rare Disease patient who is a member of the LGBTQ community as a Transgender person and along many other identities.

I am proud to be me, myself and I

[wondergirlsaida]

I saw my Neuromuscular doctor and I was able to find out more about the support services I can receive for people who have partial paralysis and I am going to find out what other resources I can receive to help me as I get older for my genetic disease and my chronic medical conditions and more etc.

I am also receiving support services for people who have Hemiplegia and more support for Partial Paralysis both

so far I have achieved 9 of my goals I have made for myself for 2025

I don’t want to depend on my mother to advocate for me and I definitely don’t want to depend on her for help constantly

I am doing everything as my own strong independent woman I am doing everything to the best of my ability and if I find myself struggling I get through everything I was taught from mom and my medical team

My chronic medical conditions do not discourage me

My chronic disabilities do not discourage me

My genetic disease do not discourage me not one bit!!!

I am learning more from mom and my medical team everyday

If something was to happen to my mother I know exactly what to do and how I can handle myself and how to take care of myself just like she did for me growing up

I have so many wonderful support services and programs

I’m thankful and grateful for everything

I am going to continue to battle through everything everyday!!!

I am proud to be me!!!!

I am proud to be a Rare Disease Warrior!!!!

I am proud to be a Chronic illness Warrior!!!!

I am proud to be a Disabled Woman who is full of strength, bravery and Powerful Abilities!!!!

I am overcoming my Paralysis One Day At A Time!!!!

I am me and I wouldn’t want it any other way!!!!

[wondergirlsaida]

I am going to receive lots of support services for my Hearing Loss and I am very thankful and grateful for that.

I have my hearing Loss due to my genetic disease and I also struggle with hearing soft speech and more etc I am learning how to advocate for my Hearing Loss Disability I have a condition called Sensorineural Hearing Loss in both of my Ears.

Along with my Hearing Loss Disability I also have my speech and Language disabilities and chronic struggles

I am breaking my silence and opening up about everything that I been dealing so I can use my voice and use my experiences of what I live with and go through to help many others

My medical team and my Audiologist is helping me so much I am also part of many organizations for my Hearing Loss Disability.

I am going to receive Assisted Listening Devices to help me when I start my school next month

I am very thankful to have a wonderful Audiologist it’s been a extremely long journey to get myself the best Audiologist I have to help me when you have Disabilities and Rare Diseases it’s extremely hard to get great Specialists of doctors to treat you and I am very thankful that I got all wonderful specialists on my team for Lifelong Care and support especially as I get older and as mom gets older too.

I am my own Advocate and I only want to depend on myself cause nobody not going to take care of my genetic disease and my other chronic conditions and rare diseases like myself and how mom have done for me growing up.

I have all of the skills and tools to help me with everything

I Got This!!!!

[wondergirlsaida]

My genetic disease (Partial Trisomy 8q Duplication Syndrome for short Partial Trisomy 8q) in my case is a serious severe complex chronic medical condition due to how it affects me and I am not afraid to be vocal about it I am using my voice to help others who live with chronic genetic diseases my genetic disease affects me in all areas and all ways I have so much support

I am no longer ashamed to open up about what I deal with

Rare Disease awareness is so important in this world and especially for all the millions of females who are affected by rare diseases and genetic diseases

I’m thankful that I have learned so much from my medical team and my neuromuscular and Neuro genetics doctors both

I have all the resources I need to help me become the woman I want to become as I get older and I am proud of the woman I am today

When I was a young girl growing up I had such a hard time accepting myself with my genetic disease and my disabilities and it got to the point where I was not helping myself as I got older I was able to get myself help and get myself fully educated with my genetic disease and my disabilities

I am proud of myself for how far I have came in my journey

I have so many wonderful organizations that is helping me everyday I am active in lots of activities and so much more etc

I know I can get through all of my challenges and I know I have so much Love and support and I don’t take anything for granted

I’m thankful for all the love and support I have

I Got This!!!!

[wondergirlsaida]

My appointments I have with my Neurogenetics doctor have all been going really good I am going to get connected to more helpful organizations and activities that can help me as I get older. I have support services and activities for people who are medically fragile as I get older I will be receiving Lifelong support so I can continue to become a better and stronger woman

I do not want to depend on my mother for anything and I don’t want to depend on my doctors for anything either

I want to depend on myself and have many skills to support myself through everything and learn how to navigate through my challenges the best way I can

I got to talk about my chronic pain and all the different types of therapy services I receive to help me

I am also going to get more support for my chronic mental health disabilities and struggles, my disabilities and my chronic medical conditions and also my other rare diseases I live with

I got to express myself fully with everything at my appointment and I feel very proud of myself for doing it

I am now on track to get myself to enjoy my Life better while I’m still young and I’m very thankful

I am going to receive services for people who are medically fragile as well as disability services in all areas

I’m receiving service for people who have neurological disorders as well and so much more etc

I am going to learn how to prevent myself from Falling and stumbling when I start my second week of Physical Therapy and my Neuro physical rehabilitation treatment program.

My Neurogenetics doctor is truly amazing I’m so thankful and grateful to have her in my life

My medical team rocks!!!

I couldn’t ask for anything better!!!

I feel very happy I did everything I said I wanted to do and made it all happen!!!!

I am proud to be a Partial Trisomy 8q Duplication Syndrome for short Partial Trisomy 8q Warrior

I’m going to continue to battle my genetic disease 24/7 and every other chronic condition I have

[wondergirlsaida]

I am so thankful and grateful that I am going to have continued support for myself as I get older I am receiving help for my chronic Paralysis disabilities I live with due to my Genetic disease (Hemiplegia and Partial Paralysis) I am going to continue to have my therapy services I am no longer ashamed to say that I am a young woman living with Paralysis

I struggle a lot with my mobility and walking I struggle with the challenges of not always being able to use my whole feet to move and walk I do tip toe walking most of the time I have my AFO Braces and I also have my Forearm Crutches to help me walk and move without falling and losing my balance.

Physical Therapy is extremely helpful for me along with my Occupational Therapy and Speech Therapy as well.

My genetic disease has caused me to have so much in life I am not discouraged by it

I am going to stay strong through everything

I know I can use my voice and speak up to help millions of other people who are living with chronic Paralysis due to chronic disabilities and rare diseases and more etc

My genetic disease affects me so much neurologically and I get lots of help from my Neurologist

You are never alone navigating life with Paralysis and any other neurological disorder and neuromuscular diseases and don’t never give up!!!!

It took me many years for myself to allow me to get the help and care I needed growing up with my chronic disabilities, chronic medical conditions and my rare diseases.

I am all the way open and vocal about everything and I am not afraid

My genetic disease is very challenging I know I am supported, cared and Loved!!!!

I’m thankful for my neurologist and my wonderful medical team!!!!

[wondergirlsaida]

I had the big talk with my doctor and my neurologist today about my genetic disease and my battles in every single full detail I had to get myself through from when I had my seizures as a result due to my genetic disease to my paralysis and mobility struggles.

It was so hard for me to talk about my seizures for so long I have been carrying the heavy weight of everything and it got to the point where I felt like I was suffocating.

I have dealt with Focal Seizures, Grand Mal Seizure, Absence Seizures and idiopathic seizures due to my genetic disease I am thankful to have such a wonderful primary care doctor and such a wonderful neurologist

I got connected to the Epilepsy Foundation for help and support I’m part of different support groups to help me and support me.

I have learned that I am not alone in my journey

I’m not alone in my medical condition journey

I’m thankful for all the love and support

I am learning how to advocate better

I am all the way open about everything I have and deal with due to my genetic disease

I am no longer carrying no heavy weight or suffering silently with anything

I am proud to be who I am

My genetic disease have a huge effect on me physically, neurologically, cognitively, and more etc I am going to continue to overcome all of my chronic conditions and disabilities

I am going to continue to battle through everything everyday

I’m forever thankful and grateful for all the love and support and wonderful care I have

I want to do better and be a better advocate for myself and I want to be a stronger role model for all of the millions of people who are living with rare diseases, chronic medical conditions and disabilities!!!!

#EpilepsyAwareness

#EpilepsyWarrior

[wondergirlsaida]

I feel absolutely wonderful I feel so happy I am literally jumping with joy and proudness I know everything about how my genetic disease affects me & what all it does to me i am thankful for my team I didn’t have to suffer with not knowing and i got clear answers

My genetic disease is called Partial Trisomy 8q Duplication Syndrome for short Partial Trisomy 8q in my case it is a serious severe complex chronic medical condition (it affects me in all areas and all ways it affects me Neurologically, Neurodevelopmentally, my GI, my swallowing, my Eating/Food intake, IBS, ,Sleep, Cognitively, Physically, Memory, Learning, Speech and Language, Behaviorally, Growth, Pulmonary, my Heart development, my Development, Neuromuscular and so much more etc)

I was born with my genetic disease I was also born Pre mature

I spent many many times in the hospital due to my genetic disease and other chronic conditions of mine

My genetic disease causes me to have multiple chronic medical conditions and chronic disabilities and other chronic rare diseases as well.

I have a wonderful medical team that helps me everyday in all areas

My genetic disease causes me to have lots of chronic conditions and challenges I have struggled with so much etc

I have struggled with knowing how to do my basic skills I have struggles with my executive functioning and more etc due to my genetic disease

I have struggled with my social skills and my Language due to my genetic disease

My genetic disease has caused me to be Medically Fragile due to how it affects me and what it does for me

I have dealt with my seizures due to my genetic disease

I struggled with so much and I am overcoming everything everyday

It took me an extremely long time to become the woman that I am today living with my disease and I did it!!!!

I am advocating as strongly as I can to get through everything and educate all about how my genetic disease do

I am thankful and grateful for my medical team I have a huge support team

Today I am a stronger woman living with my genetic disease and all of my other chronic medical conditions and chronic disabilities

I am a proud advocate for all the millions of people who are living with rare diseases, chronic medical conditions and disabilities

No matter where you are in your rare disease journey, disability journey and chronic medical condition journey never give up keep moving forward to get your answers sometimes it takes a while to get the answers and the wait is so worth it at the end

I am glad I waited cause I got the best results ever and I accomplished everything I waited years to do

I am proud to be a woman living with my Genetic Disease

I am proud to be a Neuromuscular Disease Warrior

I am proud to be a Rare Disease Warrior

I am proud to be a Disabled Woman with lots of abilities

I am proud to be a Chronic illness warrior

I am proud to be fully open about my genetic disease and chronic struggles and chronic conditions

Most importantly!!!!

I am extremely proud and so happy and blessed to say that I am fully educated and confident about my genetic disease and everything about it!!!!! I DID THAT!!!! I was determined and on a mission to accomplish this and I did!!!!

I am going to continue to live my life to the fullest and help everyone and continue to serve the rare disease communities, chronic medical conditions communities, Disabled communities and so much more etc.

Never give up!!! Don’t Give Up!!!!

#RareDiseaseWarrior

#DisabledAndAbled

#ChronicillnessWarrior

#ChronicIllnessAwareness

[wondergirlsaida]

After so many years and decades of struggling and struggling with so much severe emotional pain and mental pain I am officially ready to restart my journey and restart my life again with a powerful and positive mindset emotionally, physically and mentally

I have gotten so much help and care from so many people and organizations

I also have learned how to overcome all of my struggles and challenges and so much more etc

I have learned how to advocate better and be a stronger person

I have learned to be more honest with myself as I get older

I got over the fear of learning about my genetic disease and how it affects me

I got over the fear of learning about my disabilities and all of my struggles and challenges

I got over the fear of Navigating my life as a medically fragile person as well

I am raising my voice as loud as I can about everything I live with

I am thankful to have a wonderful support system and a wonderful medical team

I have completed my self discovery journey I know who I am clearly, I know what I want to do, I have the tools to live my life with honesty and Authenticity

I had to learn about myself without distractions and I had to learn how to trust myself to make the best choices and decisions as I get older

I am so proud to be me, myself and I

I am proud to have my genetic disease

I am proud to have my rare diseases

I am proud to have my disabilities

I am proud to be medically fragile

I am proud to have my chronic medical conditions

I am proud to have my mental health disabilities

I am proud to have my multiple identities within the LGBTQ community

I no longer have to be afraid to be my true self

I am happier than ever

I am ready for everything and I am looking forward to everything

I can’t wait to start back getting involved in more advocacy opportunities fully open and completely honest about myself

I can’t wait to start back being fully involved in my Leadership work and Activism work and so much more

I can’t wait to be able to enjoy myself way more and Live life to the fullest

The main thing is

I DID IT!!!!!

I did it as my own independent woman with wonderful help and care

I am all the way open and I no longer have nothing to hide!!!

I am Free!!!

I’m happy to be the unique one of a kind me!!!!

[wondergirlsaida]

I feel extremely proud of myself I have came long ways to become the person I am and to become the person I have grown to become as well. I used to struggle severely with having a voice to express myself fully and open up to others and everyone about what I deal with

I became fully open about my genetic disease, my other rare diseases, my chronic medical conditions, my disabilities and mental health disabilities

I am open about myself being medically fragile

I also became open about myself living with my Epilepsy as well

I did my most biggest thing of opening up about myself having my multiple identities within the LGBTQ community

I am more than ready to open up about it in a more positive, powerful and authentic way and I made myself a promise to not hide it and keep it to myself cause I know i can use my voice to tell my story and help others who may be feeling overwhelmed to come forward

It took me a extremely long time for me to be able to really open up and come out with my identities cause I didn’t know how to do it by myself being disabled, Living with my genetic disease and myself being medically fragile

I got to the point where I am tired of running away and being scared

I’m ready to continue to live happy and cheerful I don’t have nothing to hide

I am proud to be myself and I finally got to the point where I don’t have to feel ashamed and hide myself from those who love me and care about me

I love myself so much and I am ready to move forward

To officially complete my self discovery journey im ready to start over again and reintroduce myself again in my most powerful way and most importantly honestly

My name is Saida I am medically fragile

I live with a extremely ultra rare genetic disease called Partial Trisomy 8q Duplication Syndrome for short Partial Trisomy 8q

I live with chronic medical conditions

I live with rare diseases

I live and battle mental health disabilities

I live with Epilepsy

I live with multiple chronic disabilities

I am a member of the LGBTQ community as well

I have my gender identities i live with I am happy to be Transgender, Genderfluid, Genderqueer, Transmasculine, Non Binary, i also live with Gender Dysphoria and Gender Euphoria.

My other identities are Bisexual, Pansexual, Omnisexual, Demisexual, Allosexual and Queer.

I been navigating my life with my gender identities for a extremely long time I never had the courage to open up about it until now and I feel wonderful talking about it I’m not scared to talk about it no more

I am forever thankful and grateful to have so much love and support

I’m thankful and grateful that my medical team helped me so much

I am inspired by so many

I did it and I can move forward and focus on things that make me feel happy and empowered and inspired

I am looking forward to everything

I am confidently me and I am my true honest authentic self I wanted to do everything for me

I am also looking forward to getting back into dating and when I do find a Good man he will have a honest me as well I had to be honest with myself first and now that I have done that I can do so much better with everyone and with everything I get involved in

I am happy to be me

I am all the way open

I am not afraid of anything

I am done running away

I am happy to be who I am and what I’m about

I am looking forward to everything and continuing to advocate for all

My self discovery journey was so worth it

I DID IT!!!!!

ProudToBeMe

[wondergirlsaida]

In honor of Disability Awareness Pride Month I am proud to be me and I may be disabled but I am 100% abled

I don’t let my disabilities stop me from doing absolutely anything at all I may have my multiple disabilities I have multiple abilities i want to shine a light on this important awareness

Everyday is Disability Awareness Pride Month it’s not just a one time moment

I don’t let my conditions stop me from living my best life

I don’t let my conditions stop me from trying out new things if I have a difficult time I work hard to get through the challenges and find a way to make it work.

I’m thankful for all the love, acceptance and support and so much more etc

Thank you so much for accepting me and my rare diseases

Thank you so much for accepting me for my disabilities

Thank you so much for accepting me and my mental health disabilities

It’s not about our disabilities it is all about our Differing Abilities

It’s our Abilities that makes us special and unique

I don’t view myself having multiple disabilities I instead view myself as having multiple abilities

In honor Disability Awareness Pride Month and Differing Abilities don’t forget to give yourself love and honor everything you have accomplished and so much more

Love you all