Three gorgeous little brothers but only Luca, the designer baby can 推定する/予想する a long life as his siblings both have an incurable genetic illness
- Duchenne Muscular Dystrophy (DMD) 影響する/感情s about 2,500 children in the UK?
- Theo Taussig, 7, and his brother Oskar, 5, from Surrey both を煩う DMD
- Parents Klara and Nick were 申し込む/申し出d genetic 審査 IVF for their third son
- Little Luca, 20 months, was born without the 病気 影響する/感情ing his siblings??
With their sparkling blue 注目する,もくろむs and 感染性の giggles, the Taussig brothers look the picture of happiness as they play in the garden of their home.
Yet the two eldest boys ? Theo, seven, and five-year-old Oskar ? を煩う an incurable genetic 病気 which will see them grow 女性 as they get older, and means they are ありそうもない to live past their teenage years. But their younger brother Luca will not 苦しむ the same 運命/宿命.
For Luca, now 20 months, was conceived using a special type of IVF, with doctors 審査 a 一連の embryos and choosing one that did not have the 欠陥のある 遺伝子 that 原因(となる)s Duchenne Muscular Dystrophy (DMD), the 条件 苦しむd by Theo and Oskar.
Luka Taussig, centre, pictured wi th his 年上の brothers Theo, left, and Oskar, 権利, was conceived using a special IVF technique which 審査するd his 遺伝子s to 確実にする he did not have the same genetic 突然変異 as his siblings who both 苦しむ Duchenne Muscular Dystropy (DMD)
For Nick Taussig and his wife Klara, Luca is a blessing, but also a 思い出の品 of the cruel march DMD.
Almost from birth, the difference between the Luca and his siblings was obvious: how he became stronger every day, while Theo and Oskar 悪化するd. Nick, a 45-year-old film 生産者, says: ‘Luca was はうing at nine months and walking at 12 months. Duchenne children are like old men from the day they’re born and ますます 扶養家族 on you for everything.’
Klara, who runs an after-school art club, 追加するs: ‘Even now, Luca is stronger than his brothers, so if he 押し進めるs them or they fight, we have to do our best to explain to him that Theo and Oskar are weak and we need to look after them.
‘Theo and Oskar love having someone to play with at their level, and that’s what they’ve got 権利 now ? all of them laughing and 存在 happy together.
‘Luca takes the 真面目さ out of our lives that before was so tiring ? the endless trips to hospital, watching our boys 悪化する. Each day brings challenges but we’re counting our blessings.’
DMD 影響する/感情s boys who are born with a 遺伝子 突然変異 that means they cannot produce dystrophin, a protein 決定的な for muscle strength and 機能(する)/行事. Muscle fibres break 負かす/撃墜する and are 取って代わるd by fatty 問題/発行する.
Klara and Nick Taussig, pictured, did not know one of them carried a 欠陥のある 遺伝子 until after the birth of their two eldest sons Theo and Oskar who 相続するd DMD
The 条件 is usually 診断するd between the ages of two and five, and there is a 安定した 拒絶する/低下する in muscle strength so that by the age of 12, many boys are 限定するd to a 車椅子. Both Theo and Oskar rely on one as they cannot walk for more than ten minutes.
Although girls can carry the 欠陥のある 遺伝子, they rarely develop any DMD symptoms.
The 二塁打 diagnosis four years ago was incredibly difficult for Nick and Klara to 熟視する/熟考する. There was no family history of the illness, although they now believe Klara carried the 欠陥のある 遺伝子.
Nick says: ‘A year before, I’d approached Alex Smith of Harrison’s 基金, wanting to make a 文書の about his 試みる/企てる to 完全にする an Ironman carrying his five-and-a-half 石/投石する 無能にするd son Harrison the whole way.
‘I’d even written a pitch 述べるing how Duchenne would slowly kill their son. Now this was our sons’ 運命/宿命 同様に.
‘The gut-wrenching sadness meant we were unable to sleep or think. Every time I looked at our boys, all I could see was a slow, painful 拒絶する/低下する. They would never play rugby, never go to university, never realise their 十分な 可能性のある.’
Three months after the diagnosis, the couple were 申し込む/申し出d 解放する/自由な pre-implantation genetic diagnosis (PGD) IVF at St Thomas’ Hospital in London to enable them to have a child 解放する/自由な of the 破滅的な 病気. PGD can be 申し込む/申し出d when one or both parents have, or are 運送/保菌者s of, a known genetic abnormality. The most popular 実験(する)ing is for sickle 独房 病気, cystic fibrosis, Huntington’s and DMD.
‘At first, we thought we had more than we could 扱う already, but slowly we (機の)カム around to the idea,’ says Nick.
‘Of course, there would be 消極的なs, bad days and 状況/情勢s that would be far from perfect, but we talked and agreed the 肯定的なs would surely outweigh that.’
A healthy embryo was created during the second 一連の会議、交渉/完成する of IVF and Luca was born in January last year. Today, the couple, from Box Hill, Surrey, say they try not to think about the 未来. ‘Luca will no 疑問 become 失望させるd at times that he can’t play with his brothers in the way he would like, while Theo is already ups et that Luca can play football and he can’t. We just have to keep talking, communicating, listening,’ says Klara.
Theo now understands that he has Duchenne and 述べるs himself as ‘無能にするd’. But his parents are 努力する/競うing to keep the boys in mainstream schools and for their lives to be as normal as possible. This is helped by Luca, whose presence makes his brothers more active. Although there is 現在/一般に no cure, Theo is taking part in a 裁判,公判 to 実験(する) a new 麻薬 which is hoped will slow the 拒絶する/低下する of muscle turning into fat.?
- Nick is fundraising for Harrison’s 基金, which raises money to help find a cure for the 病気. You can 寄付する to the 控訴,上告 using this link to JustGiving.com.
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