The Child of HoPE for September 2007 is Ryland William Jesse, son of Nick and Summer Jesse of Hartford, South Dakota.
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Ryland William Jesse came into the world on November 19, 2003, as a healthy baby boy born to Nick and Summer Jesse of Hartford, South Dakota. At Ryland’s four month checkup, his pediatrician was concerned because Ryland’s head wasn’t growing and Ryland was not holding his head up very well. The doctor ordered a CT scan for the following day.
Summer had a unique relationship with Ryland’s pediatrician, as he was also Summer’s pediatrician as a child. This doctor who had known Summer all of her life was the one who had to deliver the news from the test results. He explained the results of the CT scan and referred Nick and Summer to a neurologist.
Within the coming days, Nick and Summer would hear a word that would change their lives—Holoprosencephaly. As Summer reflects on that moment, “I still remember him saying holoprosencephaly. I had been doing some searching on the internet and came across holoprosencephaly, but never thought that could be what he had. He had been such a good baby with no problems.” After the neurologist explained the condition and warned them of what could, would, and might happen over the course of Ryland’s life, it was now time for Nick and Summer to share this news with their family and friends. Summer says, “I still remember that day like it was yesterday. One of the hardest was explaining it to my boys, Nathan and Mitchell who were 9 and 6 at the time.”
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Ryland is nearing his fourth birthday, and Summer says that the days have gone by so fast even though they have been filled with countless doctor appointments, a dozen or more hospital admissions, and various trips to the emergency room. Last summer, Ryland’s pediatrician warmed Summer’s heart when he remarked that Ryland has done much better than he would have ever thought.
Through it all, Ryland is a happy little boy who finds happiness in the simple things of life such as the sounds and atmosphere of a local football game, the headlights of a passing car, or the rolling credits at the end of a movie. Even when doctors and nurses must poke or prod him, Ryland still has a smile for them!
Like many children with holoprosencephaly, Ryland has become a teacher in his own special way. Ryland has taught his family and others around him so much about love, life, and living each day to the fullest.
Summer has been a wonderful advocate for Ryland and has encouraged Ryland and his brothers to give back to their community. Ryland has appeared on television many times as he and his brothers participate in fundraising events in their community. With Summer’s help, Ryland has created various works of art that have been printed on calendars, holiday cards, and t-shirts to support various organizations and charities.
When Summer speaks from the depths of her heart, she admits, “There are times when I wish for Ryland to be normal. I hate to see him suffer when he is sick, and I wish I could take that pain away. I wish he could fall asleep with ease and get a good night’s sleep everyday.” She goes on to add, “There are just so many things I wish he could do, but if he were a typical child, he wouldn’t be Ryland.”
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