澳洲我儿子在生日聚会上玩激光标签时,腿上抽筋...原因使我们的心碎了

在澳大利亚中文新闻




一个家庭的生活'完全改变了',当他们发现自己心爱的七岁儿子的抽筋(一种罕见遗传疾病的症状)被误诊为自闭症三年半。

在MailOnline上交谈,温特女士说:'Evan说:'Evan有时会说他讨厌他的自动效果,因为他是他的自动效果,因为他 class =“ mol-para-with-font”>'他认为自己真的很僵硬,非常紧张,被视为另一种症状。'

MS Winter解释了埃文(Evan)七岁生日前几天发生的严重抽筋。 src =“ https://i.dailymail.co.uk/1s/2025/07/18/01/100416033-14917015-image-image-image-image-a-18_1752797977777786.jpg”但是与我们的两个美丽的孩子,Amelie和Evan'” class =“ blkborder img-share” style =“ max-width:100%” loading =“ lazy” />

MS Winter说:'直到最近,我们还是“正常”的家庭,我们的两个正常但“正常”的生活,Amelie和amelie和evan, id =“ I-1AEF3AB5F61A512C”被告知他患有一种称为Duchenne肌肉营养不良(DMD)的疾病 - 一种严重的遗传性疾病,会导致肌肉损失,导致困难站立“ class =” class =“ blkborder img -share style =“ max -width:max max -width:100%” loading =“ lazy lazy” />这会导致肌肉损失,并导致困难

”

MS Winter震惊地震惊地发现自己在她的儿子中不知道自己的儿子,因为她说的是任何家族历史,因为她不知道她的儿子,因为她说了自己的家族历史,涉及classect classion classion classef class form class form class form class for class < /p par < /p par < /p> her husband held hands 'very tightly' when receiving news of the diagnosis and it was a 'very quiet drive home'.

Ms Winter added: 'Sometimes it feels like we're just living in a parallel universe and it will all just end soon.

'If our little boy had had a blood test following his first appointment with the community pediatrics team three and a半年前,我们早些时候知道了很多。他是如此有趣,甜蜜和爱心 - 他非常受到与他会面的每个人的喜爱。他遇到的每个人都在恐龙事实之后就充满了恐龙事实。我们的两个美丽的孩子Amelie和Evan。我们感到有幸运的信念,有两个幸福健康的孩子。他们不得不向朋友,家人和公众寻求帮助感到“尴尬”。

这个家庭现在正试图筹集资金来帮助Evan的状况,以帮助Evan为自己的状况求助,因为他们不得不为自己的朋友和public prappla而< /p < /p> < /p < /p> GoFundMe page organised by Ms Winter reads: 'As Evan reaches his teenage years and early adulthood, he will become fully reliant on us for absolutely everything as the degeneration in his muscle accelerates.

'The caveat, we can't afford a home that can be made suitable, despite being a two working parent household, with local prices of properties that could be adapted marketing for between £500-600,000。

'我们不能增加工作时间,而错过与男孩的宝贵时间。我们无法搬到更便宜的地区,因为我们在当地拥有支持网络,朋友,儿童学校和医疗团队。 We are essentially stuck in a system that is broken and cannot offer any assistance.

'We can't save our beautiful little boy from this awful, horrendous disease but we will try with everything we have to give him a safe and comfortable home, where he can have the best childhood we can give him.'

Ms Winter told MailOnline Evan's symptoms had 'never足够明显地投入Google',她认为DMD周围应该有更多的认识。

'如果父母觉得有些东西不太正确 - 相信你的肠子,更加努力,她得出结论。  


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