Kiandra’s Story

Kiandra LeeShae Samuels was born with leukodystrophy which is a type of cerebral palsy. It is a degenerative brain disorder that affects the muscles in her legs and speech. Kiandra was diagnosed when she was about 6 months old and from that moment on, our lives were changed. In 2006, I was teaching at North Carolina State University and taking care of two teenagers and an infant with leukodystrophy. I tried relentlessly to get Kiandra the help that she needed. Because we lived in rural North Carolina, that was all but impossible because of the distance that the therapists had to drive. I was told, because there were no other patients in the area, that she could only receive therapy 30 minutes a week. I would take off work just to take her to Chapel Hill, North Carolina Children’s Hospital (a 6 hour drive both ways) just for them to tell me that her only option was to travel to St. Louis, Missouri for a selective dorsal rizotomy surgery that could actually make her worse than what she already was. When I tried to get her equipment (gait trainer, stander, E-Z Rider), the physical therapist at the hospital rejected my request and said the only thing that she would sign off for would be a wheelchair! Needless to say, I was hurt and angry, because I knew the potential and determination that Kiandra had even as a 2 year old.

I spent 3 years going back and forth with the doctors and therapists. I finally made an appointment with a local pediatric orthopedic specialist. When he heard that she had leukodystrophy, without even looking at her, he immediately said, “she’s going to die.” I said no she’s not, because she doesn’t have the progressive form of the disorder and Kiandra was progressing well. He then said, after actually examining her that she could walk with the right collaboration of treatment. Well, finally I thought, a fool with some sense…LOL …..I went home and I began to research different cities and their medical facilities.

I spoke with my sister who is a captain with the Atlanta Police department and she mentioned the hospitals here. So, I prayed and I decided to talk to my other kids and family. The kids didn’t want to move, my family didn’t want us to go, but I had made the decision to leave my job and home in order to give Kiandra a chance at a life of self-sufficiency and mobility. I had no idea where we would live at first, but I explained to my older children that I was prepared to sleep in my car if I had to. I didn’t want to split us up, but I didn’t want them to suffer. I gave them a choice to either come with me or stay with their grandparents. Luckily, they chose to stay with me because I don’t think I could have handled being separated from them.

Things worked out, because by the time we prepared to move, we had a house waiting on us. I cashed in my 401k and rented a u-haul, hooked my car to it and drove kids, belongings, and myself to Atlanta. I’ll never forget that day; Saturday June 1, 2006 at 12 noon, I left everyone and everything that I had ever known. I was sad, scared, and excited all at once. I knew that once I made the decision, I couldn’t second guess myself, so there was no going back. Since moving to Atlanta, I have had a lot of first time experiences with different things. We got settled, Kiandra started going to Scottish-Rite Children’s Hospital and the Shriner’s Hospital through the Yaarab Temple in Atlanta. Kiandra has had serial casting, botox, and receives regular therapeutic services at Kedron Elementary and Hands on Healing in Fayette County.

Early on the doctors and therapists said that she would NEVER crawl. Well, Kiandra has been crawling ever since she was 1 ½ years old. Kiandra is standing with assistance, taking steps, has about 15 words in her vocabulary (that you can understand), can identify all of her ABC’s when she sees them, sings, feeds herself, drinks from a cup and straw, change her own TV channels, puts her CD in her CD player and is a very happy child. If I had to do everything all over again, I would in a heart beat because Kiandra’s motivation, has kept us all motivated and focused. It has been a financial struggle and it has been one of the biggest challenges that I have ever had to face.

Being awarded the Kiddos’ Clubhouse Foundation scholarship will enable Kiandra to receive other therapeutic services and adaptive equipment that we could not afford otherwise. In the coming months and years, it is my sincere hope and expectation that Kiandra will successfully complete each milestone with the strength and determination that she has displayed her entire life. Can she do it?……………..Yes she can!