{"id":49889,"date":"2018-06-09T18:00:30","date_gmt":"2018-06-09T22:00:30","guid":{"rendered":"https:\/\/huntsville.dopperonline.ca\/?p=49889"},"modified":"2018-10-01T12:42:07","modified_gmt":"2018-10-01T16:42:07","slug":"sickkids-drug-therapy-trial-gives-local-girl-the-ability-to-walk-again","status":"publish","type":"post","link":"https:\/\/doppleronline.ca\/huntsville\/sickkids-drug-therapy-trial-gives-local-girl-the-ability-to-walk-again\/","title":{"rendered":"SickKids drug therapy trial gives local girl the ability to walk again"},"content":{"rendered":"

Photos courtesy of Angel Dawson<\/em><\/p>\n

UPDATE JULY 2, 2018: A Doppler reader was so moved by Melody’s story that he started a gofundme campaign<\/span><\/a> to help the family with ongoing medical expenses associated with her treatment.<\/em><\/p>\n

It started with a seemingly benign lump on Melody Dawson’s head, the kind just about every active kid gets at some point. But it wouldn’t go away.<\/p>\n

After multiple doctor’s visits, a pediatrician finally diagnosed her with Langerhans Cell Histiocytosis (LCH). LCH is a rare disorder in which the body produces too many Langerhans Cell Histiocytes\u2014a type of immune system cell\u2014causing lesions or tumours or other tissue damage, particularly affecting bones and skin. It can occur in people of any age but is most common in young children. And in some cases, like Melody’s, it comes with other consequences like neurodegeneration and diabetes insipidus (caused by damage to the pituitary gland).<\/p>\n

That diagnosis came in 2012 when Melody was just four. Her diabetes insipidus, which she began showing signs of a year and a half earlier, was quickly brought under control with medication. The LCH required chemotherapy over the course of a year. It’s now in remission.<\/p>\n

But six months after completing chemotherapy, Melody began showing signs of neurodegeneration, which affected her ability to walk and talk. “They told me if (the neurodegeneration) comes out, they cannot reverse it, they cannot stop it,” said Melody’s mom, Angel. They tried IVIg (intravenous immunoglobulin) therapy, they tried a study drug called CAMPATH and they tried chemotherapy. None of it helped.<\/p>\n

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Then doctors at SickKids told Melody’s parents about a different drug trial. She was one of a handful of children to start the trial in June 2015 and the results have been remarkable.<\/p>\n

Prior to the drug, Melody’s condition had degraded to the point where she could barely walk or talk. “Within a month of being on that drug we saw improvement,” said Angel. And for the past year she’s been able to talk and walk, and even run down the hall. “She\u2019s not 100 per cent, but this drug stopped it and reversed some of it. There is damage and she\u2019ll always have that, but from where she was she is 100 per cent in my mind. The drug has been tremendous for her. (Her improvement) is like night and day\u2014it makes you want to cry.”<\/p>\n

Although her walking and talking have improved, Melody’s comprehension is still reduced but Angel is hopeful that it, too, will return. In the case of another child on the same drug, “it was like a cloud lifted out of his brain and he can concentrate and understand things, whereas Melody can\u2019t,” said Angel. “It’s hard for her.”<\/p>\n

Melody is now 10 and finishing grade five at Irwin Memorial Public School. Her condition has stabilized for now. “There’s been no more major improvement, but there\u2019s no regression either. I\u2019m hoping when she gets older and the dose goes up more, maybe it will improve her more but we don\u2019t know,” said Angel.<\/p>\n

So for now, the educational assistants at Irwin are working with her to bring her school work up to a grade five level. “Irwin is amazing. I don\u2019t worry about her in that sense,” said Angel, adding that the school has done wonders for her two youngest sons, who both have autism, “so I have faith that they will work wonders with her, too.” Melody uses a walker at school to prevent falls, and her classmates know to be cautious around her.<\/p>\n\n\t\t