'I started to 嘆く／悼む the 未来 I thought we were going to have': NBC News 特派員 Richard Engel 明らかにする／漏らすs his two-year-old son's heartbreaking 戦う／戦い with Rett Syndrome

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NBC News' Richard Engel has opened up for the first time about his son's heartbreaking 戦う／戦い with a rare genetic neurological disorder.

The 新聞記者／雑誌記者 was embedded with 軍隊／機動隊s in South Korea when he received a phone call that his two-year-old son's doctor needed to speak with him.

Henry has Rett Syndrome, a disorder that 原因（となる）s 厳しい physical and cognitive impairments.

'My son is probably not going to walk, probably not going to speak, probably not going to have any mental capacity beyond the level of a two-year-old,' the 44-year-old father said to?PEOPLE.

Scroll 負かす／撃墜する for ビデオ?

NBC News 特派員 Richard Engel's two-year old son Henry was 診断するd with Rett Syndrome last 落ちる

'I called the doctor and he said, "We 設立する something. It’s very, very 厳しい. It’s life long, not treatable,"' Engel said to TODAY.?

'I was in a 明言する／公表する of shock. I got 支援する into this 軍用車隊, shaking. It was the worst day of my life.'

He and his wife Mary had first noticed developmental differences in Henry more than a year earlier, and then decided to have him genetically 実験（する）d.?

'It was the middle of the night, and the public 事件／事情／状勢s officer was talking to keep us awake, telling us about her son joining the football team, and taking the SATs,' he said to the magazine.?

He and his wife Mary had first noticed develop mental differences in Henry more than a year earlier, and then decided to have him genetically 実験（する）d

The developmental disorder could 妨げる Henry from ever walking or talking

'I was thinking, "There's going to be no football team. There's going to be no SATs." I started to really 嘆く／悼む the 未来 I thought we were going to have with Henry.'

'You hear these stories, that boys develop slower than girls,' Engel said. 'So we thought there was still a chance that he was just a late bloomer. That he was going to snap out of it.'

By the time Henry was 18 months old, he still wasn't sitting, standing or walking. The couple turned to genetic 実験（する）ing. After a six month wait, they had their answer.?

The NBC News 長，指導者 Foreign 特派員?was embedded in South Korea when he got the diagnosis

'It’s not just 延期する. It means life long, 永久の, untreatable physical and 知識人 impairment,” Engel said.?

'Unfortunately, the more we learned about it the worse the news got.'

Rett Syndrome almost 排他的に 影響する／感情s girls, and most people 診断するd with it die before the age of 25.

However, there is a 微光 of hope in Henry's 事例／患者.

Henry's 事例／患者 is わずかに different in that he has a milder 突然変異 of the MECP2 遺伝子, which some doctors believe means he could 打ち明ける a cure

The preeminent Rett Syndrome 研究員,?Dr. Huda Zoghbi, fou nd an anomaly in Henry's 事例／患者 and she believes may 持つ／拘留する a cure to Rett Syndrome.

Henry has a milder 突然変異 of his MECP2 遺伝子, which then 原因（となる）s only a 部分的な／不平等な 減少（する） of the 決定的な MECP2 protein.

'The 戦略 is to 研究 独房s, 監視する the level of the protein and identify 遺伝子s or 麻薬s that can 上げる levels of the protein to 訂正する the symptoms,' Dr. Zoghbi said.?

Henry receives daily physiotherapy and visits the hospital twice a week for 任命s to help 刺激する his senses

Dr. Zoghbi's news gave the Engel parents some 猛烈に needed hope.

'Talking to them was the first time we had hope,' Mary said. 'Knowing there’s somebody dedicating her career to this, it gets us through.'

Henry receives daily physiotherapy and visits the hospital twice a week for 任命s to help 刺激する his senses, によれば TODAY.

'I'm 基本的に his 経営者／支配人 for that and cheerleader,' Mary said. 'It gives me 目的, and it's important . I see it helping him.'?

A nine-year-old girl with Rett Syndrome recently made headlines after a photograph of her 循環させるd on Twitter as a poster 促進するing abortion.

The 報告（する）／憶測d message first read: 'It is okay to think that every child 事柄s however a lot of them do not hence the amnio 実験（する）.'

The poster went on to say: '(It) should be a 義務的な 実験（する） and if it 証明するs 消極的な and the woman does not want to 中止する then all 法案s accrued after that is on her and the father.'

Twitter 最初 拒絶する／低下するd to 除去する the image, 説 it did not 侵害する／違反する its 支配するs for abusive 行為.

After a furious （激しい）反発, Twitter 支援するd 負かす／撃墜する and 除去するd the image and 問題／発行するd an 陳謝 to Natalie Weaver and her daughter Sophia.

For more （警察などへの）密告，告訴（状） about Henry or to 寄付する to Dr. Zoghbi's 研究, visit https://www.duncannri.org/.??

A Twitter 使用者 株d a プロの／賛成の-abortion poster with a photo of Natalie Weaver's daughter Sophia, who also has Rett Syndrome