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Lilah has been taking a newly approved drug, Spinraza, which has dramatically improved her condition.Dax Melmer / Windsor Star Lilah was not part of a clinical trial but got what’s called “special access” to the drug, Nicole explained. She got the drug for free. Normally, it costs US$750,000 for the first year and $375,000 a year after that, Nicole said. Lilah got her first dose in October. It’s administered by needle into her spine. At first, the shots came every 15 days, then every 30. Now, Lilah and her parents travel to London once every four months to see a neurologist and get another dose. They spent 208 days in hospital last year, coming home just before Christmas. Dad Eric just returned to his job as a crane operator last month. Nicole last worked as a personal trainer. Except for the six hours overnight when a nurse comes to relieve her, or evenings when Eric is home, Nicole is by Lilah’s bedside, suctioning her lungs through a tracheotomy tube and encouraging the little girl to move her muscles. The living room of their home near the Devonwood Conservation Area looks like a hospital room. Lilah has a hospital crib, a couple ventilators, a suction machine, an oxygen machine, an oximeter to monitor oxygen saturation levels, a feeding pump and a Liquid Grip|Canada machine to help Lilah cough. There’s also a backup generator in case of a power outage.
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