My name is Ryan, and I am sixteen years old. I am in the 10th grade at Western Branch High School. I have Hadju-cheney Syndrome. This syndrome causes bone problems, short stature, bilateral hearing loss, heart, kidney, teeth, and mouth problems.
I have had to deal with this syndrome my entire life because we were unable to find a doctor who could diagnose it.
As a result of my syndrome, I have had many, many surgeries throughout my life.
The most difficult surgery I have experienced was a basilar invagination surgery on the back of my skull and neck which took ten hours to complete. After the surgery, I was kind of scared
because I woke up in a neck brace and thought something might have happened during the surgery. When I woke up, my mom
was standing there beside me holding my hand, and she wouldn’t let go. I told my mom that I wasn’t scared
because I had an angel and Jesus at the end of my bed. I knew that I had angels and Jesus looking out for me because
all of a sudden, I didn’t feel any more pain and wasn’t scared.
Jesus has been a true blessing in my life because He helps me get rid of pain, and He
guides me where ever He wants me to go. He is really in my life and is always there for me whenever I need Him.
Because I feel this so strongly, I wrote a song, “Jesus You Are in my Life”, which was put to music and is now
used as a praise song at our church. Whenever I have bad news from doctors, Jesus is always there and will heal my pain.
God has blessed me with the ability to write poems. I wrote a poem about my love for Jesus a couple days before my last
surgery on my spinal cord. It describes how He is always there for me. The words are from my heart, and I hope they will be
a blessing to you.
God Is Always There For Me Our heavenly father is always there He knows my fear and my despair And if I call on Him in heaven He will always hear my prayer When life’s
struggles comes And our Father watches from above I do not feel alone Because He brings compassion and love If I am scared or I am afraid I will always stay bright Whether I’m hurt or in the hospital God will
always do what’s right I have seen so many wonders And the beauty of this earthly land Why should I be
afraid? When Jesus is holding my hand So as I bring this poem to an end God will always care I thank the
Lord, my soul mate, my friend For always being there.
