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Family & Fundraising!

By: Nicole Hutchinson

When Talib was born, my family was there. Talib’s Dad, my Mother, my Sister, my Niece and Nephew. Some of the most important people I have in my life. They were there to share the moment I had been anxiously awaiting for 9 months. I got to be the first one to pick up and hold my baby boy. His Dad announced the gender of our baby as he entered the world. I felt so much joy and happiness. Talib was so small and so quiet. As I held him for the first time, he didn’t cry and seemed so content laying in my arms on my belly. The nurses took Talib from me to check him out on the table and he still wasn’t crying. During our short stay in the hospital Talib never cried. We asked the nurses if it was normal that he wasn’t crying. They’d say all babies are different. I never have seen a baby that didn’t cry immediately after birth. A day and a half spent in the hospital. Talib was eating ok and everything else was ok with Talib so we got to go home.

Our first days at home with Talib were wonderful, getting into routines. Talib ate and slept. He was a great sleeper. He’d sleep all night long.  We would have to set alarms to wake him up to eat because he’d just keep sleeping. His first doctor appointment everything was good but he still didn’t cry. Days went on and it came time for another doctor appointment. We had a few more concerns for Talib. He still wasn’t crying, he didn’t smile, he didn’t have any facial expressions and his muscles seemed weak, he was very floppy. Talib wasn’t holding his head up around the time he should have been. Dr. Joy, Talib’s Primary Care Doctor acted fast. Why was Talib so “floppy”? Why wasn’t Talib expressing himself with facial expressions? Why wasn’t Talib reaching the first milestones? Dr. Joy sent out referrals to speciality doctors to have Talib seen. She referred Talib to Physically Therapy, Occupational Therapy and Speech Therapy. A Nurse came to our home for frequent check ins. Dr. Joy ordered many different tests for Talib. For 17 months all the tests would come back normal. With all the Therapy sessions Talib was making slow and steady gains.

In February 2018, we received the results of a second genetics test that had the answer. The answer to why Talib’s development was unlike the average child. There was a mutation in Talib’s EBF3 gene. When the nurse had called me and told me the results of Talib’s test I felt relieved, scared and fearful. I was relieved because there finally was an answer to our why. I was scared because I thought, what does this mean for my son’s future. I immediately had fear, fear of the unknown. The EBF3 gene mutation was discovered just a year and few months ago. None of Talib’s doctors or his specialist knew of the EBF3 mutation and if they did hear of it, they knew very little. I had to stay strong, strong for Talib. I had to tell myself everything is ok. I will help Talib be the best person he can be. I will push him to work hard to achieve the small and big accomplishments. I will be his biggest advocate. 

In August 2019, my sister and my two nieces got into bracelet making. My oldest niece, Kaylani, decided she wanted to sell her bracelets she made and donate money to something. First she thought she’d give money to an animal shelter. Then with more thought, the EBF3 HADDS Foundation came to mind.  In October 2019, there was a local craft fair. Kaylani had a table selling her bracelets. Many people were interested in her table. Not only was Kaylani raising money for the  EBF3 HADDS Foundation, this shy girl was coming out of her shell talking to strangers and raising awareness of EBF3 HADDS. She had her bracelet flyer and an information flyer on HADDS, passing them out to people. Kaylani had bracelets made and ready to be bought. She also took custom orders. The craft fair was a success. Still wanting to raising money for the EBF3 HADDS Foundation, she is still making bracelets to sell and taking custom orders. I am so proud of my niece. Proud of the young lady she has become. Proud that she has a kind heart and she wants to help her little cousin.

Family sticks together.

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