'My 長，率いる 傷つけるs, let's go to the doctor's': Parents of boy, 4, who had a 一打／打撃 開始する，打ち上げる 控訴，上告 for £5,000 to 扱う／治療する ultra-rare brain 条件 in America

• Zane Smith has CCM3, a genetic 突然変異 that could kill him at any time
• より小数の than 100 people are known to を煩う the little-known 条件
  
• His parents Kim, 38, and 物陰／風下, 39, need to take him to specialist in Chicago
  

By Harriet Arkell

Published: 10:10 BST, 16 January 2013 | Updated: 16:29 BST, 16 January 2013

Heart-breaking: Zane was 診断するd when he was one

The parents of a young boy with a deadly and 極端に rare brain 条件 are trying to raise £5,000 so that he can have 決定的な 治療 in America.

Little Zane Smith, who is four, 苦しむs from CCM3, which 原因（となる）s cavernomas, or oversized 血 大型船s in the brain and spinal cord that can lead to life-脅すing 一打／打撃s or seizures.

Zane has already had one 一打／打撃 and is likely to have more, so his parents want to 飛行機で行く him to America to see the world 当局 on the disorder.?

Dr Issam Awad runs a 高度に-率d clinic in Chicago that 申し込む／申し出s specialised MRI ざっと目を通すs to 査定する／（税金などを）課す the p ermeability, or leakiness, of the 血 大型船s.

He is an 当局 on the rare genetic 突然変異 that is known to 影響する／感情 より小数の than 100 people in the world.

Zane lives in Huntingdon, Cambridgeshire, with his parents Kim, 38, 物陰／風下, 39, and sisters Keira, 15, and Lily, eight.

His family is now （選挙などの）運動をするing to raise the money needed to 飛行機で行く him to Chicago for 治療 for the 条件 that was 診断するd すぐに after Zane's first birthday.

Mr Smith said: 'Last night he was sobbing because of a 苦痛 in his 脚 予定 to his 条件.

'いつかs he says "My 長，率いる 傷つけるs now, let's go to the doctors".

'That's 全く heartbreaking for us all.'

There is no known cure for the genetic 条件 that could kill Zane at any time.? 治療 at Dr Awad's clinic 申し込む／申し出s Zane the best chance of living as long as possible.

Mrs Smith said: 'Zane needs to be watched 絶えず as the 条件 影響する／感情s his balance, his 団体／死体 movement, and his behaviour.

'I call it the Jekyll and Hyde 条件 - one moment he can be 罰金 and happy, the next Zane has turned into a monster.

基金-raising: 物陰／風下 Smith need to raise £5,000 to take his son to see the world 当局 in CCM3

'On Saturday night we were at some friends 存在 公正に／かなり active and then he （機の）カム over to me to say his 長，率いる 傷つける and within seconds he was asleep.

'Zane can be 無作為に sick, have no energy at all, and 嘘（をつく） on the sofa.? Next minute, he can be all 権利 and active.'

The 条件 is 原因（となる）d by a 突然変異 on the CCM3 遺伝子, and was only identified in 2005.

It means that Zane can be 空いている, twitch, and を煩う 苦痛s 原因（となる）d by the 多重の cavernomas, or clusters of 血 大型船s, micro-haemorrhaging.

Mrs Smith said: 'The importance of the ざっと目を通す is that we can manage Zane's 条件 when things are not going 井戸／弁護士席.

So 勇敢に立ち向かう: Little Zane Smith, left, has had brain ざっと目を通すs here, 権利, but needs to 飛行機で行く to the US for specialised help

'The type of MRI used is not 利用できる in the UK.? It will show where the cavernomas are, how likely they are to haemorrhage, and what the 味方する-影響s of the bleeds could be.

'It means that if Zane had a 一打／打撃 the doctors could tell 公正に／かなり quickly which of the cav ernomas had haemorrhaged.'

Zane's father said the boy has a 50 per cent chance of having a major 一打／打撃 before he reaches 15.

If he 飛行機で行くs to Chicago to be seen by Dr Awad, his doctors in the UK would then be able to call on the US doctor's 専門的知識 at any time.

A ざっと目を通す taken at Hinchingbrooke Hospital when Zane was first 診断するd 最高潮の場面d 15 cavernomas in his brain, and その上の 実験（する）s last year showed two more had developed.

Fifty per cent of 患者s with the 条件 begin having brain haemorrhages as children, and Zane 落ちるs into this 部類.

Connie 物陰／風下 設立するd the Angioma 同盟, which 設立するd the clinic in Chicago that has 申し込む／申し出d anyone 苦しむing from CCM3 to have a ざっと目を通す and 協議.

Dr 物陰／風下 said: 'Very little is known about CCM3 - the 遺伝子 was discovered as recently as 2005 and the fact that this is an ultra-rare disorder was not （疑いを）晴らす until 2011.

'Because of this, the 医療の community is not familiar with 管理／経営 of the illness.'

She 追加するd: 'Zane has already had a brain haemorrhage.? He has at least 17 brain lesions and this number is 推定する／予想するd to 増加する.

'Hence the need for Dr Awad's 専門家 管理／経営.'

Mr and Mrs Smith and their daughters are trying to raise 基金s through 捕らえる、獲得する-packing, skydiving, a football match and an autumn ball.

They have 始める，決める up a Just Giving page to encourage people to 寄付する so they can raise enough to 支払う／賃金 for them to take Zane to Chicago.

The £5,000 的 will 支払う／賃金 for flights, accommodation, the ざっと目を通す and a 協議 with Dr Awad.? If more than £5,000 is raised, the 黒字／過剰 will go to the charity Cavernoma 同盟 UK.

支持者s who would like to get behind Zane and his parents are 招待するd to make 寄付s at www.justgiving.com/helpzane