Living with Jarcho Levin Syndrome

By Roberto, United States, January 24, 2014

Living with Jarcho-Levin syndrome
This is the story of Roberto "Papo" Lugo born August 21,1992 .

My son Roberto just celebrated his 1 9th birthday this August 2011.We thank our mighty and awesome God everyday that we still have him in our lives.Roberto was born with Jarcho-Levin Syndrome. We were informed after he was born at 36 weeks by emergency "C-section" that he has Jarcho-Levin Syndrome. He spent several weeks in the Newborn Special Care Nursery at Waterbury hospital in Waterbury,Conn and was on Oxygen and had a feeding tube.He was sent home several weeks later.We as new parents of a special need child continued to care for him and did the best to follow direct orders to keep him alive and healthy. He had several hospitalization for respiratory distress, RSV, bronchitis, weight loss, feeding problems and other lung problems and growth.At six months of age he aspirated and was on a ventilator for several weeks and was sent home using oxygen. We as parents have learned so much to continued his care and monitor his vital signs, feeding tube, CPR, oxygen.The doctors informed us that his chance of survival were very slim and he wouldn't be able to talk, walk or have a normal life. We moved to Virginia to see how his survival rate would improve and we were very bless.He was three when his took his first steps and walked what an amazing site to see. At 4 he began Head Start and whole new ball game he looked so adorable walking into the school with oxygen and all. They made him feel at home with chair and table to fit his size. There has been some obstacles that he has face over the years had several respiratory infections due to his chronic lungs. But he is normal adult. He is very short and small for his age.He walks, talks, run, ride a bike, plays drum ,he is in JROTC at his school ,and also in Police explorer for the city which we live in. He has become an amazing young man.He has already defeated every odd that has been against him ,his life expectancy is undetermined. We plan for his future just like our other 3 children. We are now planning his Graduation this coming June 8th 2012.He has meet two other male with this syndrome and we are always doing research on the web and looking for new families with children like Roberto. We want to help other families with information and want to learn more with very case because they are all different and someday meet and be inspiration to others with JLS. May God bless you all and thank you for taking your time to read our story. Everything with God is possible. We are also on Facebook: Nancy Feliciano Lugo
Today i'am updating this post on June 8,2012 Roberto graduated from Hopewell High School we are very proud of him and all I remember that night tears of joy as he walk across the stage thanking God for all his work in our lives and also on August 21,2012 Roberto celebrated his 20th birthday and is doing very well. we are now looking into college that be able to accepted him with his special needs thank you all for taking your time to learn about JLS. May God bless
UPDATE: Roberto is doing very well and I'am so bless that in August he turned 21 and now is attending Woodrow Wilson in Fishersville,VA. We also were very bless to visit Florida and meet Analysa and Ariana and Angel whom are also part of this big family of Jarcho Levin syndrome. Thank you Lord for all your blessing in every area of our life with out you we would be lost...God is good all the time.Thank you

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