Jude Owen (a.k.a. Judo) Chávez was born with a rare genetic condition known as Cri du Chat, which means that he is missing part of the short arm of his fifth chromosome (5P-). Rarer still for a child with five p minus, he has a translocation of chromosome 13, meaning that all bets are off for a prognosis of his physical and mental development. We can only wait and see what comes his way. Instead of lamenting the loss of whom he might have been without this condition, his family is learning to accept who he is becoming on his own terms. Jude adores his big brother, Luke, and is still puzzled whenever he sees his little brother, Roman. He smiles easily and has a wonderful laugh. It is hard to resist this social charmer when he fixes you with his inquisitive gaze. Jude is very determined to remain engaged with the world around him, struggling against his physical limitations to reach important milestones, such as sitting up on his own (not quite yet) and holding his head up. In the early morning of December 3, 2004, Jude inexplicably stopped breathing. His parents quickly resuscitated him and he was rushed to the hospital. An exhaustive battery of tests was performed, but instead of answers, more questions arose about his condition. Jude’s parents began a long struggle against the medical establishment to resist the invasive procedures (tracheotomy, G-tube, fundoplication...) prescribed as the answers to his many physical problems. Eating and breathing are the most serious issues, but the hardest thing (for us) by far is to make decisions about our son’s quality of life and then stand our ground as his advocate. Since January of 2005 he has been receiving palliative care in residence at the New York Foundling Hospital. He has a wonderful team caring for him. With the help of the nurses, doctors, therapists and teachers at the Foundling, Jude has made slow but significant advances in his physical, nutritional and social development. None of this would be possible without Jude’s own boundless determination to overcome all obstacles — the trait that continues to give his family the courage to fight for his opportunity to live on his own terms. Although Jude’s daily life is generally free of drama, it is punctuated by random apneic episodes. He receives anti-seizure medication and is closely monitored for these “blue spells,” but there is no reliable method for predicting when they will occur. Here again, we rely on Jude’s will to survive to mitigate this arbitrary abnormality. Jude will turn five years old in May. If you would like to discuss 5P Minus issues or our personal experience with Cri du Chat, you may contact Barbara and Brian via Jude’s e-mail address on his home page. |
