雅各布出生时双手各自只有一条掌纹，医生曾向他的母亲表示，这可能预示着他患有疾病。然而，当雅各布九岁时被诊断出患有一种极其罕见的疾病时，他的母亲仍然感到十分震惊。
When Jakob was born, he had only one palm crease (掌纹) on both of his hands. The doctor told his mother, Lucy, that this could mean he had a health problem. Nine years later, Jakob was diagnosed (诊断) with MPS VII, a very rare condition that influences one baby every ten years in the UK. Lucy remembered she was told to “just bear in mind that could mean something”, but when Jakob was diagnosed last year, she said it still came as a shock.
雅各布出生时，他的两只手上分别只有一个掌纹。医生告诉他的母亲露西，这可能意味着他有健康问题。九年后，雅各布被诊断出患有MPS VII，这是一种非常罕见的疾病，在英国每十年就会有一个婴儿患上这种疾病。露西记得她被告知“要记住这可能意味着什么”，但当雅各布去年被诊断出来时，她说这仍然令她感到震惊。
“We know something was different with Jakob when he was born, and as time goes by, it becomes clearer. MPS VII is a condition that influences Jakob’s ability to move because of pain. He also has some developmental delays and mild cognitive impairment (认知障碍), meaning he learns and understands things more slowly,” Lucy explained.
“我们知道雅各布出生时有些不同，随着时间的推移，这一点变得越来越清晰。MPS VII是一种由于疼痛而影响雅各布移动能力的疾病。他还有一些发育迟缓和轻度认知障碍，这意味着他学习和理解事物的速度更慢，”露西解释说。
Jakob gets treatment every week to help manage his condition. Lucy is very proud of her son because he keeps smiling and talks a lot during every visit to the hospital. The family is focused on the future and managing Jakob’s condition step by step. They have many hospital visits, and because the condition is so rare, the future is uncertain. They follow the doctors and said they are just fantastic.
雅各布每周都会接受治疗，以帮助控制他的病情。露西为她的儿子感到骄傲，因为他每次去医院都面带微笑，而且很健谈。这家人专注于未来，一步一步地管理雅各布的病情。他们经常去医院，而且由于这种情况非常罕见，未来是不确定的。他们听从医生的建议，并说那些医生太棒了。
The 36-year-old mother wants to raise awareness and help other families who are going through the same thing. When Jakob was diagnosed, there was no one they could turn to for support. Lucy hopes that by sharing their story, other children can be diagnosed and start treatment earlier.
这位36岁的母亲希望提高人们的意识，并帮助其他有同样经历的家庭。当雅各布被确诊时，他们没有人可以寻求帮助。露西希望通过分享他们的故事，其他孩子可以更早地诊断并开始治疗。
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