Addison

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14 years old
Kansas, USA

Addison born on September 11, 2009 is a very energetic and not scared of anything 13-year-old from Kansas. She lives with her dad, her sister (which is her favorite person and best friend), myself, 1 dog and 9 chickens.

At birth my husband and I knew something was wrong with Addi. She would twitch and her eyes would flutter and roll back a little, doctors told us she was just dreaming. Her right side was floppy and right arm would not move by itself; doctors told us it was just a pinched nerve. In months and years to come watched her struggle with and never meeting milestones. Motherly instincts and having a normal typical child, I was not just going to sit back to see what happens like the doctors kept telling us to do.

On August 1, 2011 she was diagnosed with having Atonic, Absence and Complex Seizures by a Neurologist in Wichita, KS. We still did not know “WHY” she was having seizures. So, in September 2011, we were sent to Children’s Mercy in Kansas City. Little did we know that would be the start of our many journeys to Kansas City. They did several tests and everything was coming back normal. The first genetic test was done and it came back NORMAL. It was so frustrating because we just wanted to know “WHY”.

In between 2011 and 2019 she underwent many surgeries. She had a VNS Implanted (Vagal Nerve Stimulator), had a Feeding G-Tube placed, had eye muscle surgery in both eyes (2x on the right, 1x on the left), ear tubes put in both ears and had her tonsils removed. We then started having problems with her sleeping, behavioral, not making eye contact, wanting to play alone, not talking and walking.

In May of 2019, her Neurologist then diagnosed her with Mild Autism, Lennox Gastaut Syndrome (LGS), Global Developmental Delays, Sleep/Behavorial Disorder, Sensory Disorder, and Anxiety. Addi is currently on 5 medications for seizures, 1 medication for anxiety, and 2 medications for sleep.

In July of 2021 we found a Neurologist/Genetic Specialist in Overland Park, KS. He did a Genetic Test on my husband, Addi and myself, told us it would take it months to get back the results. On December 20, 2021 we finally got the results as to “WHY” Addi has all the diagnosis’s she does. It was because she has SYNGAP1! We had so many mixed emotions that day. We were so happy, scared, nervous, and excited! We are very thankful for the love and support of our family and friends that have learned about SYNGAP1 with us.

Addi is home-schooled and we are so thankful for finding a great school online to help us with this journey. They have gone to extra measures for her and her needs. She meets with her Special Ed Teacher 3x a week for 30 minutes, Speech Teacher 3x a week for 30 minutes, and Occupational/Physical Therapist 1x a week for 30 minutes. Then during the rest of the time Addi and I do things at home to help her in everyday living situations. We also travel 3 hours one way every week to see a Speech Therapist in person. But with limited services in the State of Kansas (Rural) we would travel to the end of the earth to get her what she needs. She can only say 20-30 single words (no sentences) but let me tell you she gets her point across very well if she wants or needs anything. The biggest blessing with the online school is that they gave us a name of a place that helps special needs children and they have a program that helps get Communication Devices.

In March 2023 we traveled to Kansas City to Ability KC to see if they could help us get Addi a Communcation Device. We spent a few hours testing different tablets and programs to see if she would qualify for a device. It was determined that she would definitely benefit from the device but the BIG question was, would insurance approve it. After 6 long months of waiting and lots of paper work, Addi is approved for the Communication Device. We are all very excited to help and watch Addi use this device to help her with her communication of her wants, needs and most importantly her feelings/frustrations.

Addi loves anything outdoors, especially the water. She also loves all animals, watching YouTube Kids, all the Santa Claus movies, Frozen, Blippi, Barney, and Bluey. Her favorite colors are blue and pink. Addi loves all music, being with her sissy, and going to church.

No matter what life has or does throw at her she is always happy and smiling. She can make your day go from bad to good without saying a single word. All she has to do is look at you or listen to her contagious laugh and all your problems fade away. Addi is very lovable and touches everyone she comes in contact with. Even though some days are tougher than others, with her every day is a blessing in our family’s life.

One thing my family would like to say to all parents, caregivers, and etc. with a loved one with SYNGAP1….”For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future.” Jeremiah 29:11

One day the ups and downs will all make sense and one day there will be a cure for SYNGAP1. What a joyous day that will be!

The Worth Family