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The Inspiring True Story of Zachary Kale Moore
Sunday, June 1, 2008
By Kenneth Lewis
Young Zachary was born 8 weeks prematurely and at 6 weeks the Moore family noticed that there was some thing permanently wrong with his health.Â After a very difficult time with determining a diagnosis, Zachary, now 6 months old was diagnosed with a rare form of a very rare disease called progeria.
Progeria is a rare and fatal genetic disorder that causes children to age rapidly, beginning in their first two years of life.Â The first child with progeria ever documented in scientific literature was discovered in 1886.Â Since then there are only about 100 cases of progeria documented in medical literature and there are only 11 known cases in the United States today.Â Progeria only occurs in 1 out of every 4-8 million births.
According to the Mayo Clinic Children with progeria, which is also known as Hutchison-Gilford progeria syndrome (HGPS), generally appear normal at birth. By 6 to 12 months, signs and symptoms, such as skin changes and hair loss, begin to appear.Â The average life expectancy for a child with progeria is 13, but some with the disease die younger and some live longer - up to the age of 30.Â For at least 90 percent of children with progeria, the cause of death is a complication of the progressive stiffening of the arteries that lead to the heart and brain.Â There is no known cure for progeria at this time, but ongoing medical research has shown some promise for treatment.
Zachary had a very rare form of progeria which cased him to age 30 times faster then normal.Â Zachary`s daily physical challenges were failure to grow, tight skin, and stiff joints.
According to Keith Moore Zachary`s father and the author of (Old at Age 3: the story of Zachary Moore) Zachary was less than 4 pounds at birth and never exceeded 12 pounds during his life.Â His tight skin prevented him from utilizing his full lung capacity and caused him continual discomfort through out his short life. The stiff joints meant he would never walk or be able to straighten his legs, arms, and fingers completely.Â He only had four teeth so his diet was limited and he could only eat certain foods.
Zachary seldom slept for more than two hours at a time.Â His tight skin and small stomach prevented him from eating normal portions of food.Â He would wake up every two hours during the night and Molly, Zachary`s mother and Keith would feed and care for him.
Zachary continually dealt with his pain and was constantly fighting for his health on daily bases which was an inspiration to many around him.Â Even with all the severe health problems, Zachary spent 95% of his life out of the hospital and doing the usual things that children like to do.
Some of the best time I spent with Zachary was the time that we prayed together.Â Zachary took this time very seriously and he truly loved Jesus."Â Keith Moore
Zachary loved to camp and fish with his family and according to Keith he was a great fisherman who preferred the catch and release program.Â He would wave and tell the fish goodbye when they released the fish into the waters.Â He enjoyed driving the boat and had his own tackle box which was full of lures of his favorite colors.Â Zachary would some times throw handful of lures into the lake, maybe it was because he thought he was feeding the fish, but Keith said he liked be silly too.
Besides going fishing Zachary liked to go hunting with his dad and his brothers and sisters.Â According to Keith they never got any thing on the two hunting trips that they were able to go on together but they were the most productive hunting trips of his life.Â Just to be able to spend another day with Zachary was rewarding for the Moore family.
Zachary had his own power wheelchair too and when he drove it he finally had the freedom to get around on his own.Â He drove it all through the house, up and down the street, into the stores exploring all the things that interested him.
Keith said Zachary was very honest when he drove his wheel chair. If he didn`t like what he saw or what some one said he would simply zoom off..
Zachary also loved playing with the family dogs but he especially had a love for his service dog named Hobbs.Â Hobbs was a golden retriever that was trained to help Zachary do whatever he needed.
Zachary also enjoyed attending school and was accompanied by his mom Molly and his service dog Hobbs.Â He had a love for art and singing was one of his favorites too.Â If some one wasn`t doing the motions or singing the right words he would motion to them to "get with it".
He truly was the BOSS in everything he did!
Even with all his physical disabilities, Zachary still had a love for sports.Â He tried so hard to keep up with his brother and sisters as they all played sports together.
He liked to play basketball with Hobbs.Â When Zachary would shoot a basket Hobbs would retrieve the ball back to him so he could shoot it again.
He particularly liked soccer and wrestling too.Â Keith said with a little help and support standing up he did quite well.
When Zachary was about one year old Keith began calling him "Boss".Â Keith was amazed at his ability to control his life and what was going on around him.Â Keith said it felt natural the first time he called him Boss and it quickly became his preferred nickname.Â Boss always had everyone`s best interest in mind, and he had more confidence than anyone they knew.Â Keith said Zachary truly had the qualities of a successful boss facing new challenges each day and being able to over come them only to face new problems and challenges the next day.
After witnessing Zachary deal with his many challenges and health issues it was evident to his parents that Zachary had complete faith and was truly blessed by God no matter his physical circumstances.Â Zachary was able to help people find their faith and overcome their own challenges, no matter what they were going through.Â His positive out look on life was truly a blessing to every one who knew him.
Zachary`s third birthday party
Zachary`s third and final birthday party was held at a ballroom at Oklahoma State University.Â He had so much fun helping plan the party.Â Zachary decided to make it a fundraiser for the Progeria Research Foundation (PRF) and instead of gifts, the family asked that donations be made to the Foundation.Â The theme was "Hunting for a Cure."Â He had catered food, a big cake and a professional DJ, and many games and activities for the kids.Â Zachary made his entrance by a News 9 helicopter which took him for a ride before the party.Â It was such an event the local media covered the story.Â Zachary had so much fun with all his friends that day and the family said they will never forget it.
Keith said, even though it may sound like they knew this would be his last birthday party they had no idea or really thought for sure that would be the case.Â The family always kept a positive outlook on his life and they were actively working on a cure for him.Â Keith said, they treated Zachary like each day was his last day.Â "I guess that was one of the blessings of having a child with a terminal illness the chance to live each day with a sense of urgency that it may be the last one.Â That can be a wonderful thing, Keith said.Â We found such happiness with this lifestyle and now we treat our other children the same way; it has brought blessings upon them too."
Keith also said, they are often asked, "Why do you think God gave you Zachary?" I think this is one of the many answers to that question.Â God did not give us Zachary to test us or break us; I think He may have given us Zachary to show us how He wanted us to live.Â All of us are given these challenges and it is our choice whether we turn them into blessings or we let them destroy us.Â We chose not to ask why and fill our hearts with hate, self pity, and anger.Â Instead we recognized Zachary as the true gift from God that he was.Â Not only did that result in an amazing life for our son, but also for our family and many others who knew Zachary.Â And now Zachary`s life is helping and inspiring thousands of people who read his story in Old at Age 3.
Zachary`s final days on earth
Keith said, Zachary never quit fighting for his life.Â He was in the hospital due to a virus that turned into pneumonia.Molly and Keith never gave up hope and were there with him through it all.Â When it became clear Zachary was near the end of his life with his family, Molly told him "if you see Jesus, you go with Him. Don`t be scared, we love you and will see you soon."Â A few moments later that is just what happened.
Young Zachary went to be with the Lord..
To learn more about PRF, please visit www.progeriaresearch.org.
Copyright 2007 CHRISTIAN NEWS TODAY
Source: CHRISTIAN NEWS TODAY