{"id":209303,"date":"2019-08-30T12:23:43","date_gmt":"2019-08-30T17:23:43","guid":{"rendered":"https:\/\/www.liveaction.org\/news\/?p=209303"},"modified":"2019-08-31T00:13:49","modified_gmt":"2019-08-31T05:13:49","slug":"miracle-drug-saving-lives-babies-diagnosed-spinal-muscular-atrophy","status":"publish","type":"post","link":"https:\/\/archive.liveaction.org\/news\/miracle-drug-saving-lives-babies-diagnosed-spinal-muscular-atrophy\/","title":{"rendered":"Miracle drug saves lives of babies with disease, yet some still want them aborted"},"content":{"rendered":"
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Shane and Jennifer Lee know the fear, grief, and hope that come with receiving a diagnosis of spinal muscular atrophy (SMA) for their child — three times over<\/em>. Their first daughter Jocelyn died from SMA type 1 when she was just four and a half years old. Their son Nathan is six years old and uses a wheelchair to get around. Their two-year-old daughter Kirra, however, will likely never suffer the full scope of the disease. They have two other children who do not have the condition.<\/p>\n

SMA is a genetic condition that, in its most severe form, is deadly even before birth. It is genetically inherited — each parent must pass on a mutated gene — that causes the loss of motor neurons which control the movement of voluntary muscles. There are four levels of severity from type 1 to type 4 though at least one study points to the distinguishment of a type 0<\/a> – or prenatal onset<\/a> – which is noticeable in babies before birth.<\/p>\n

In the womb, SMA<\/a> in its most severe form is detectable by a lack of fetal movement, problems with the baby’s joints, and respiratory failure. After birth, SMA type 1 is diagnosed within a few months due to the newborn’s “floppy” limbs and weak trunk as well as difficulties eating and swallowing, holding up his\/her head and even breathing. A child’s symptoms with type 1 will progress quickly and children can die before their second birthday, never having been able to sit up. Type 2 appears typically after seven months but before 18. This type mostly affects the legs and these children usually won’t be able to stand up. Life expectancy can be from early childhood to adulthood. Types 3 and 4 are less severe and life expectancy is close to normal.<\/p>\n

The Lees’ daughter, two-year-old Kirra, was born in the time of Spinraza, a new medication that is changing and saving the lives of people with SMA – if they can access it<\/a>. Early studies proved that the drug is beneficial even reversing some of the effects of the disease in patients. Unethically<\/a>, not all children in the study were put on the medication. Some were placed on a placebo and suffered the consequences. When doctors are already fully aware of how a disease will quickly debilitate and kill a small child, not one of them should have been denied<\/a> the medication that provided such hope.<\/p>\n

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