Deutsch Nuuelua Puu Junior aka Deejay also nicknamed The Champ was born in Sacramento, California on the 25th of November 2009, weighing in at a healthy 9 lbs 4 ounces. Deejays family moved to his father and mothers hometown of American Samoa at 4 months old, after his father Deutsch N Puu Sr retired from the Army. A few months later his Mom noticed a delay in Deejays motor skills. Very similar to his older sister Alanis who was diagnosed with a rare and Terminal disease called Spinal Muscular Atrophy (S.M.A.) and died at 2 1/2 years old. They were symptoms that his mother and father have seen before with his older sister. Doctors there advised the parents to take Djay to Hawaii for further testings. In May of 2010 Deejay was taken to Kapiolani Women and Childrens hospital in Honolulu, Hawaii for lab work. In June 2010 the tests came back positive and he was given the diagnosis of Spinal Muscular Atrophy type 1. Deejay returned to American Samoa after the diagnosis to prepare for a move back to Hawaii for Medical needs. In June 2011 Deejay suffered collapsed lungs and prompted the family and medical officials to Medically evacuate Deejay from American Samoa to Hawaii with both lungs collapsed. His motor skills became very weak and began to deteriorate dramatically. Deejay was unable to breath on his own and was also unable to eat through his mouth at this point in his life. In July 2011 Djay had surgery for a trachestomy to help him breathe and also g-tube so that he can eat. It was then that the Doctors told his parents that Deejay had a life expectancy of 2 years. Deejay was then moved to Kulanamalama Nursing Home in Ewa Beach, to await his parents who was then in search of a new home. His Parents and his eldest sister Lenei were then trained on caring for him full time before he was able to be released in their care at home. After 8 months of adjusting to the new life, learning and hands on training for his family members Deejay was transferred back into his families supervision and care on the 13th March 2012. Deejay is currently on a life support Ventilator 24hrs Of the day, however his family is adamant about allowing Deejay to enjoy his life and join in normal family functions. Due to SMA Djay needs to wear glasses, he uses a wheelchair for transporting him and to carry along side his medical equipment. After 2 years of living in Hawaii parents felt they werent really getting the full potential of what was out there for their son. On the 3rd of March 2014 the parents moved the family to Las Vegas for a better living and open range of medical care and Specialist and Doctors for Djay. Djay is now 4 years old and goes to school. He is full of life even though his body had been tattered and weakened by Spinal Muscular Atrophy he continues his fight. Hence his nickname The Champ. Since the move here to Las Vegas the family has recently discovered that his spinal cord has curved from the top 17 degrees and 24 degrees at the bottom. Both hips are dislocated and has been given a cat-scan to double check his head. Sitting has become quite uncomfortable for him even in his wheelchair (these are just to name a few are very common amongst SMA) Transportation is very limited and public transportation runs a high risk of germs and infections. Respiratory problem is the biggest problem for kids with SMA not to forget discomfort in bones and body weaknesses. With all this going on he continues to live he continues his fight! His familys biggest concern is his daily care and comfort. He is a fighter and his family well continue to support his fight! Here are Facts about Spinal Muscular Atrophy aka SMA. ~SMA facts~ *SMA is the #1 genetic killer of children under the age of 2. *SMA children with the most severe form often face quickly increasing muscle weakness, leading to paralysis and death. *One of every 6,000 children born are affected by sma. *Onenout of 40 people, most unknowingly, carry this deadly gene. *Some statistics show sma to be twice as common as als. *There is no cure We are raising Funds for The Champs Wheels and we humbly ask for your support to spread the word and to donate monetary towards The Champs Wheels at gofundme/8irlz8 The goal amount is $50,000.00!! I know that there are over 50,000 people in this world. If 50,000 people donated $1.00 each The Champ will have his dream ride.. Tasi Le Loto Tasi le Fatu means 1 Soul 1 Heart. Come together and we can all reach $50,000.00... In Jesus name amen. Thank you all and God bless..
Posted on: Mon, 23 Jun 2014 01:12:19 +0000
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