Introducing Ryan

Ryan is 16 years old and was diagnosed when he was 7 years old.

Here is his story...in his own words...

Hi, my name is Ryan Poteet. I am 15 years old. I am a 9th grader at Western Branch High School. I have a syndrome called Hajdu-Cheney. This syndrome causes multiple hearing loss, weak bones, teeth and mouth problems. Sometimes there are a lot of things that I would like to do but I won't be able to because I have a deformity in my neck. I had a surgery about 6 years ago on my neck. Even though I have weak bones and feet problems, I am a terrific dancer. I do the talent show in my school every year. Everybody thinks that I am the best dancer.

Sometimes I feel sad and upset because I'm afraid kids would tease me. But, I have a lot of friends. Sometimes I feel proud and happy because my mom has found other people that have the same syndrome as me and some look just like me. Also, I get to meet interesting people like Morgan Fairchild, NASCAR driver Jamie McMurray and Ashton Lewis, Jr. So, I have different feelings about having HCS.

Most of the time I do not let my problems get me down because I am a brave boy. I made it through almost 12 surgeries. I play golf almost every month, I can break dance, and I write poems and songs.

Ryan's main conditions are:
Cystic Renal Disease w/multi-cysts
Osteoporosis
High Blood Pressure
Bilateral Hearing Loss
Corrected PDA (requires pre-antibiotics)
Idiopathic Short Stature
Basilar Invagination
Patent Foramen Ovale
Scoliosis
Uniformed PVC’s
Ebstein’s Malformation of Tricuspid Valve – mild
Mild Tricuspid regurgitation/insufficiency

Ryan takes medication for high blood pressure and osetoporosis, and steriods and growth hormones to increase his body size.

Ryan has been my strength! He takes what God has given him and makes the best of it. The doctors didn't think he would ever walk because of the shape of his lower legs and ankles but Ryan has accommodated and taught himself to not only walk but ride a bike and rollerblade.

In January 2007 I held a multi-media fundraiser in attempt to give Ryan a BAHA hearing implant. The community came together and raised $30,000. In April Ryan underwent the surgery for the implant, unfortunately it did not stablize. His skull bones were too soft and he woke up one morning and the implant was in bed with him. He has decided to wear the BAHA hearing device on a headband. He was tested with the headband device and he realized how his world changes when he can hear.

Here is a link to the story:
http://content.hamptonroads.com/story.cfm?story=118260&ran=39060

Ryan cannot play most sports but can play golf. He is learning to play and seems to have a natural body position for it. He tried out for the high school golf team but they will not allow golf carts or rolling club carts and with the curving of his legs and ankles he was unable to walk the distance. He was very disappointed.

He loves to watch sports on TV. His favorite sport is NASCAR. His bedroom is stocked completely with NASCAR items, including pictures, posters, cars and even the actual door from the BUSCH series #25 Marines car. His favorite NASCAR driver is Jimmie Johnson, #48 Lowes car.

Ryan loves to dance. He is a talented dancer and loves to dance to hip-hop music. He enters the talent show every year at school and has the crowd on their feet.

Here is a link to watch him dance:
http://www.youtube.com/watch?v=2VONx8NbgPk

Ryan is an Ambassador for the Make-A-Wish Foundation. He had his wish granted in 2003 and enjoys helping to raise money for other kids to have their wishes granted.

Our friends and family support Ryan completely! I don't know what I would do without them.

He has a kind heart and I believe he is an "old soul". Ryan touches everyone that he meets and has a huge impact on their lives.

Pictures

Ryan and Brenna (another HCS child) was able to meet a few years ago. It was a wonderful experience to finally meet someone who understood what I was feeling. Ryan even said "I finally found someone that has hands like I do" - I have a dream that all the HCS families can meet one day.

Ryan with Ashton Lewis, Jr. Richmond Busch Series Race in October 2005	Ryan with Dale Earnhart, Jr. Richmond Busch Series Race in October 2005
Ryan with Jamie McMurray We Promise Foundation Gala in September 2006	Ryan with Jeff Gordon Make-A-Wish Fundraiser in August 2006
Ryan with Morgan Fairchild Make-A-Wish Golf Tournament in September 2006	Ryan with Ashton Lewis, Jr. Make-A-Wish Golf Tournament in September 2006

Ryan with Ashton Lewis, Jr. and Kurt Busch Make-A-Wish Golf Tournament in September 2005	Ryan with Joan Steele, Make-A-Wish Foundation MAW Tides night in August 2005
Ryan with Rey Mysterio - wish granted through the Make-A-Wish Foundation in September 2003	Ryan with Undertaker - wish granted through the Make-A-Wish Foundation in September 2003