My Journey Becoming Stronger And Resilient Living With My Complex Medical Conditions

November 3, 2023

By Saida Mahoney

Last month, I went to my neurologist and my neuromuscular doctor appointments. I have struggled so much with everything due to my genetic disease — as an infant to being a toddler all throughout my childhood and teenager years and until now.

On September 22, 1996, I was born with a extremely rare genetic disease called Partial Trisomy 8q Duplication Syndrome, also known as Partial Trisomy 8q. My genetic disease affects me physically, neurologically, neurodevelopmentally, cognitively, musculoskeletal, my language skills, and speech, it cause me to have different forms of birth defects, I have neuromuscular challenges and it also affects me developmentally and so much more. I have struggled with muscle weakness and stiffness as well as uncontrolled movements, and poor coordination, so I struggle with motor tasks, Due to my genetic condition, I have Cerebral Palsy as well.

I have dealt with everything growing up, but as I got older, it got much more challenging and harder for me. I wear Ankle Foot Orthotic Braces (AFO Braces) to help me with my movements and more. My genetic disease cause me to have many more other disabilities, and also other chronic medical conditions.

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 infant 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 proud to be me!!!!

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