The story of Saida
Over the last 27 years I have been getting myself lots of care and help for everything that I been dealing with so I can become a stronger advocate for myself and become a stronger woman living with all of my conditions I live with.
last month I went to my neurologist and my neuromuscular doctor appointments I have struggled so much with everything due to my genetic disease it have done so much to me growing up from my infant years to my toddler years all throughout my childhood years and teenager years and all the way up to now
I was born with a extremely rare genetic disease called Partial Trisomy 8q Duplication Syndrome for short it is called Partial Trisomy 8q
My genetic disease affects me physically, neurologically, neurodevelopmentally, cognitively, musculoskeletal, my language skills and speech such as Apraxia Of Speech, Stuttering and Cognitive Communication Disorder, it cause me to have Tremors, different forms of birth defects, I have mild to moderate neuromuscular diseases (NMD), I have Learning Disabilities, Processing Disorders and it also affects me developmentally and so much more etc
I struggle with muscle weakness and stiffness as well as uncontrolled movements, poor coordination, and I struggle with lots of my motor tasks as well because due to my genetic condition and I have Cerebral Palsy (CP) I also have Hypotonia due to my genetic disease.
I have dealt with everything growing up as I got older it got much more challenging and harder for me
I wear (AFO) Ankle Foot Orthotic Braces to help me with my movements and more etc.
My genetic disease cause me to have many more other disabilities and I also have other chronic medical conditions as well
I have conditions that affects me mildly, I have conditions that affects moderately and i have conditions that affects me severely as well
in some areas it’s all of the above
When I was a baby and toddler I was delayed in all areas I didn’t know how to do anything cause of my genetic condition
I will be receiving lifelong care and support from all of my hospitals and clinics
I am involved with lots of support programs and groups
I am thankful and grateful to have care for everything while I am still young
I have learned how to advocate as strongly as I can living with all of my chronic disabilities, my chronic medical conditions and my other rare diseases I have
I am determined to live my life with full of strength, power, happiness, joy and excitement
I am using all of my strength and my experiences to help others everywhere
I have my moments where I will go a few days in tears but I get myself back up again and fight harder than ever
I am thankful for all of my wonderful medical providers
I am thankful for my speech therapists
I am thankful for my occupational therapist
I am thankful for my physical therapists
I am thankful for my neurologist
I am thankful for my medical genetics doctor
I am thankful for my neurogenetics doctor
I am thankful for my neuromuscular doctor
I am thankful for my Cardiologist
I am thankful for my 2 wonderful primary care doctors
I am thankful for my movement disorders neurologist and so many more of my other doctors
I will never give up
I am thankful and grateful for all the love and support
I am proud to be me
#disabledandabled
#chronicillnesswarrior
#rarediseaseawareness
#rarediseaseadvocate
#disabilityadvocate
#cerebralpalsyawareness
#cerebralpalsywarrior
#disabledandproud