Support Team Alex
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Support Team Alex – Living with Progeria’s Disease
I want to introduce you to a dear life- long friend of mine, Dory Whitford and her grandson Alex, from Edmonton, Alberta. Alex was born in 2012, weighing 7 lbs 12oz., and appeared to be a very healthy baby. His parents took him home and attempted to care for him, but it was soon realized that his parents, although they loved him, were not capable of caring for a child. At 4 months old, social services became involved, and his parents had a decision to make, either surrender him into foster care, or to a family member. His paternal grandmother – Dory - immediately stepped in, and Alex was surrendered to his grandmother, who now has permanent custody of him.
Dory knew something wasn’t quite right with Alex’s physical development, and after several doctor’s visits and tests, she was given a devastating diagnosis – “Progeria’s Disease”
About Progeria’s Disease – Progeria’s is a rare fatal syndrome also referred to as the “Aging Disease.” The chances of being born with this syndrome is 1 in 8 million. In Canada, besides Alex, there is one other child, and overall throughout the world, there is only 120 children. Most babies born with this disease are born looking healthy, as Alex was, but within the first couple of years of life they begin to display characteristics of accelerated aging such as growth failure, loss of body fat and hair, skin changes, stiffness of hips and joints, generalized atherosclerosis along with heart disease and stroke. Even though their frail bodies are affected, children with Progeria’s intellect are not. The life expectancy on average is 13 years. There is no cure.
Alex is now 4 ½ years old. His cognitive ability is not affected in any way and he is extremely smart for his age. Unfortunately his little body is 8 times older than it should be. He has joint contractures of all his extremities. He has trouble tolerating extreme hot and cold temperatures, and has lost his eyebrows, eyelashes and hair. He has difficulty with dressing due to the joint contractures and suffers from photophobia (light sensitivity). Due to his weakened heart, he tires very quickly. He cannot tolerate most foods, and is primarily nourished with formula. He weighs 21 pounds.
Throughout the last couple of years, Alex’s grandma has separated from her husband, and in addition, she was laid off from her job. She did find new employment, but recently her hours have been cut back to only 16 hours / week, which is not near enough to support yourself let alone a child. Dory has started her own cleaning company in Edmonton and is currently looking for work. Alex is sick quite often, requiring her to be off work to care for his needs. Alex’s grandma receives no financial help from anywhere including social services, as Alex was never placed in foster care, as she willingly took him before that happened. She has gone to the ministry asking for help, but has been refused any financial help, as she was told that it is a “Grey Area.” Had she let Alex go into foster care, she would have received financial help for him. Alex is receiving the best possible care a child could receive from his grandmother, who loves and cares for his every need. However she is struggling financially to meet all those needs. Alex needs are growing quickly. Her goal is to make every day count and to give Alex the best possible life that she can.
Any help that you can give, be it a donation or a share (and please don’t underestimate a share) would be so greatly appreciated. Money raised will go directly towards Alex's growing needs. We thank you from the bottom of our hearts.
I want to introduce you to a dear life- long friend of mine, Dory Whitford and her grandson Alex, from Edmonton, Alberta. Alex was born in 2012, weighing 7 lbs 12oz., and appeared to be a very healthy baby. His parents took him home and attempted to care for him, but it was soon realized that his parents, although they loved him, were not capable of caring for a child. At 4 months old, social services became involved, and his parents had a decision to make, either surrender him into foster care, or to a family member. His paternal grandmother – Dory - immediately stepped in, and Alex was surrendered to his grandmother, who now has permanent custody of him.
Dory knew something wasn’t quite right with Alex’s physical development, and after several doctor’s visits and tests, she was given a devastating diagnosis – “Progeria’s Disease”
About Progeria’s Disease – Progeria’s is a rare fatal syndrome also referred to as the “Aging Disease.” The chances of being born with this syndrome is 1 in 8 million. In Canada, besides Alex, there is one other child, and overall throughout the world, there is only 120 children. Most babies born with this disease are born looking healthy, as Alex was, but within the first couple of years of life they begin to display characteristics of accelerated aging such as growth failure, loss of body fat and hair, skin changes, stiffness of hips and joints, generalized atherosclerosis along with heart disease and stroke. Even though their frail bodies are affected, children with Progeria’s intellect are not. The life expectancy on average is 13 years. There is no cure.
Alex is now 4 ½ years old. His cognitive ability is not affected in any way and he is extremely smart for his age. Unfortunately his little body is 8 times older than it should be. He has joint contractures of all his extremities. He has trouble tolerating extreme hot and cold temperatures, and has lost his eyebrows, eyelashes and hair. He has difficulty with dressing due to the joint contractures and suffers from photophobia (light sensitivity). Due to his weakened heart, he tires very quickly. He cannot tolerate most foods, and is primarily nourished with formula. He weighs 21 pounds.
Throughout the last couple of years, Alex’s grandma has separated from her husband, and in addition, she was laid off from her job. She did find new employment, but recently her hours have been cut back to only 16 hours / week, which is not near enough to support yourself let alone a child. Dory has started her own cleaning company in Edmonton and is currently looking for work. Alex is sick quite often, requiring her to be off work to care for his needs. Alex’s grandma receives no financial help from anywhere including social services, as Alex was never placed in foster care, as she willingly took him before that happened. She has gone to the ministry asking for help, but has been refused any financial help, as she was told that it is a “Grey Area.” Had she let Alex go into foster care, she would have received financial help for him. Alex is receiving the best possible care a child could receive from his grandmother, who loves and cares for his every need. However she is struggling financially to meet all those needs. Alex needs are growing quickly. Her goal is to make every day count and to give Alex the best possible life that she can.
Any help that you can give, be it a donation or a share (and please don’t underestimate a share) would be so greatly appreciated. Money raised will go directly towards Alex's growing needs. We thank you from the bottom of our hearts.
Organizer
Joanne Beatch Elder
Organizer
Dalmeny, SK