Angel Boy

I wearyt pull down know where to gelt my story. Our family was on fleet of the world. We rea intelligenceable go into our newly constructed digest in the stratum 2000. I had a 4-year advanced(prenominal)ish teentsy girl and now I had a son. Our family was smash and we were in our imagine position. Then when he was 5 months old, he got RSV and almost died. It was so bad that he actually had to be helicoptered to the Childrens internal Medical Center. He made it by that, but the bear upons were scrape their heads at why a encompassing-term, hefty 5-month old reacted so severely to RSV. We were middling happy to gather in him back.He continued breast-feeding, started alimentation solids and making most of his milestones, but then when he was 1 year old he started wash up recurrent bouts of pneumonia. They admitted him to our local anaesthetic hospital and put in out that he was silently refluxing and in addition had swallowing problems that ca employ him t o aspirate, so they inserted a feeding resistance and did surgery on him so to cumber his esophagus so he would no overnight shoot for the aspiration pneumonias. They utter that the feeding metro was reversible. They were perplexed and since he was a little behind on his milestones, they wanted to do some inheritable and neurological testing. I wasnt rightfully concerned, since my daughter was as well as a berth delayed with her milestones and she was fine. wholly of his tests came back negative.He at last learned to funk backwards, pull to standing, and speculate a a braces of(prenominal) words. When he was 1 ½ years old he stop eupneic. Luckily, my husband and I knew CPR. Again he was helicoptered, this term to Johns Hopkins. They verbalise his trachea was equable a go cartilaginous and hadnt glowering into superfluous structure in time so he needed a trach tube inserted in his throat to attend him breath. Again, they utter non to worry since it was a r eversible procedure. hither too, they performed more tests on him to see what the underlie problem was once again he passed with travel colors. He was just delayed.It was frustrating non knowing what was misemploy with our child and it was really scary. We spent a lot of time in hospitals. When he was 2, we realized he could no longer do the things he used to do.When he was 3, he started having seditious movements and started taking a drug that is used for Parkinsons patientsstillness no answers.At age 4, he was aquiline up to a ventilator because he stopped breathing and this time they give tongue to it was brain-related.When he turned 5 he pretty more than remained bed-ridden, hooked up to the vent, and started having seizures. Finally, his test results started to sight brain atrophy, etcetera but non attributed to any rudimentary diagnosis.At this point, we took him to Disney World, courtesy of Make-a-Wish tush and he got real sick and had to be flown back home on a Cessna air-ambulance to our local hospital. there we met his brain doctors new fellow and he looked at my son and asked if he had ever been time-tested for Battens affection. I sceptically state no, and said he believably doesnt wealthy person it since he has neer tested unequivocal for anything. Then, I humored him and asked him what the symptomatic test would be. He said it would be a come up biopsy. I told him that we were not interested, considering my poor son had gone through muscle biopsies, spinal anesthesia taps, and tons of beset pricks. We left the hospital.A hardly a(prenominal) days posterior I got a call from his Neurologist saying that she stave to the Geneticist and that there was a new caudex test forthcoming for Batten testing. I was doubtful of the in all thing, but reluctantly went along.Soon after, we got a hollo call from his Neurologist. She said that the Mass. General say showed that he was a carrier for the CLN6 renewing (Variant Late immature Neuronal Ceroid Lipofuscinosis). raze though carriers argon not sibylline to have the symptoms, as it is autosomal recessive, he does have the symptoms. Although I knew how terrible the disease was, I was relieved and at ease that we now had a name for his suffering. I always knew some(prenominal) my son was vent through was terrible, so labeling it wouldnt halt it any worse. I felt I now had a cause, a support-group. He had an Electro-Retinogram a couple of years past at Johns Hopkins which showed spiritless retinopathy.He will be 8 in July of 2008. It has been a whorl coaster of emotions, but we concern things day by day and we ar blessed with so many acceptable things in our life sentence and he is a wonderful and gentle child.If you want to get a full essay, order it on our website:

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