Home > For Families > Get Support > Rare Disease Day > Sami’s Story

Sami’s Story

   

Sami came to us in foster care straight from the hospital NICU at seven weeks of age.. It happened to be my birthday and she was the best gift I have ever received! When she was two years old, she became, legally, our daughter. In our hearts, she always had been.

We were told she had multiple congenital heart defects, was Deaf, would never see more than light and shadow due to colobomas affecting the optic nerve and retina in both eyes, had brain atrophy, and they did not expect her to learn much and would never read. We were told we would have to communicate with her like Helen Keller, by signing in her hand. We tried to imagine how we, or anyone, would be able to ever have a meaningful conversation with her considering that they said she was deaf, blind, and incapable of learning. We were heartbroken.

Sami was born without inner circular canals for balance and, they said, she might never walk. She was born with a cleft lip and palate and was a silent aspirator, so would be on a feeding tube for an indefinite time. She had no sense of smell. There were some specialists who agreed they did not know how much she could do in life. Others gave us very little hope. Some, we later learned, did not expect Sami to survive. We did everything her approximately 20 doctors and therapists suggested. But, we decided, it was God who made her and only He could decide how much she could accomplish.

So we prayed. And we asked everyone we knew to pray for Sami and her doctors, too. One day Sami was laying on the floor in our living room. My husband had made her a bar out of PVC pipe on which we hung all kinds of things. Our vision therapist had suggested we should allow her the opportunity to touch things that were soft, hard, cold like metal, various kinds of fabric, etc. I was putting away clothes one day when I stopped in the doorway to watch her. Sami turned her head toward me. It appeared she was looking at me so I waved and threw her a kiss. Nothing. After a few seconds I did it again. You cannot imagine my joy when she waved back and threw me a kiss in return!!! After that, we refused to accept any negatives.

Another time Sami was having still another hearing test. When she turned toward the toy from which the sound came, we celebrated! She heard something, saw the toy, and understood the instructions! We rejoiced! While we hoped that God would decide to completely “fix” all of Sami’s issues and one day we would wake up and she would be whole, that did not happen. Instead, over time, her sight in her right eye improved until now it is 20/30 with glasses. She had two cochlear implants and now she is able to hear and understand. She still has speech issues but she talks, signs some, and reads lips. We can have meaningful conversations and she can talk with her hearing friends as well as those who are Deaf.

Sami has endured 23 surgeries including three open heart surgeries, pacemaker surgeries, cochlear implants, T & A surgeries, cleft lip and palate surgeries, and more. We almost lost her once during a surgery and twice due to problems with anesthesia. We were told her heart was “twisted.” When we asked what that meant, her surgeon said, “She has all the parts, but not in the right places.” She didn’t walk alone till age four, and was on a feeding tube until she was 10 1/2 years old. About that time she finally got on the height and weight charts and was no longer considered failure to thrive.

It has not been an easy road. But God has been faithful. Today Sami is almost 15. She sees well with her right eye. She hears with cochlear Implants. She loves to eat, play, and learn at her own pace. Her favorite subject is reading. We put her in a dance class when she was seven. She loves it! And who would have guessed that she lives to preform on stage? She absolutely loves an audience! While once people would see her head full of black hair and ask to see the baby, then gasp as they saw her cleft lip, she now hears regularly from strangers how beautiful she is. And she is! God made our very special little girl unique. She is His design and she has used her life to inspire many others and build up their faith. We did not set out to adopt as we were older when she came to us. But we are so thankful God placed her in our home and hearts. And she is perfect!

When a child is diagnosed with CHARGE syndrome, parents can expect a difficult journey. But don’t accept the negatives that are thrown at you. Do everything you can to improve your child’s life and take it one day at a time. God made our kids for a reason. They are inspiring, but need an advocate and cheerleader. With lots of love and prayers, anything is possible. -Mary K.