Welcome
Hunter’s Story
Hunter was born on June 13, 2009 at United Regional Health Care System in Wichita Falls, Texas. At birth, he weighed seven pounds, five ounces and was 20 3/4 inches long. He had fluid on his lungs and a pronounced heart murmur. As a result, he was transferred to the Neonatal Intensive Care Unit for two days. We had a 3 day stay in the hospital before coming home to his big brother, Brayden and daddy, Brady.
At four months, Hunter’s Dad and I noticed that Hunter would shake abnormally when waking. His development appeared to be slow. After a few months, we were enrolled in the ECI program through North Texas Rehabilitation Center. The therapists recommended that we see a neurologist. Before the neurology appt, his pediatrician ordered an MRI . It was evaluated by Cook’s neurology and revealed an increased signal in the posterior whiter matter of Hunter’s brain. Further tests concluded that there was not any disease to the white matter. However, an abnormal chromosome level was detected.
We were referred to a geneticist at Cook’s Childrens Hospital in Fort Worth, Texas for further testing. A microarray analysis test rendered a diagnosis of a very rare chromosome disorder. Hunter has a duplication and a deletion on the long arm of Chromosome 10. This condition is so rare that there are no known previous cases of this type. Since there are no prior cases like Hunter’s, there is little, if any, research to serve as a guide in treatment.
We celebrated Hunter’s first birthday on June 13, 2010. This was indeed a day of celebration. It was a day to reflect on the milestones Hunter had achieved in just one year. It was also a day to ponder the considerable challenges which lay ahead for Hunter.
Hunter now weighs 22 pounds. He is 30 inches tall. In many respects, he is just like any other happy, playful toddler. He has the sweetest laugh and gives the best hugs. He is crawling around the house. However, his speech and cognitive skills are still behind. He still experiences tremors. His main form of communication is sceaming. He wakes often at night with a heart wrenching cry. Most nights, you can find me sleeping in Hunter’s room as a result of his constant waking. He also has a habit of rocking back and forth until forced to stop.
Our family has conducted an exhaustive search for a physician who is able and willing to try to treat Hunter. We have contacted doctors around the country. All but one have notified us that they are not able to help. We found a neuro-geneticist at a genetics reseach hospital in Boston, Massachusetts who is willing to undertake Hunter’s case. This involves travel to Boston, more time in the hospital, more tests, etc… This is quite a financial undertaking for our family. But we feel that we must do whatever we can to help our son. Our insurance company is not covering any of these expenses. So, were are asking you to help us help Hunter.
An account for the expense of Hunter’s care has been established at First Bank, 4110 Kell Boulevard, Wichita Falls, Texas 76309. It is under the name, Hope For Hunter.
We understand the economy has taken a toll on everyone’s finances, so if you are unable to help, we are asking for prayers.
Thank you!!
