生まれつき鼻がない、でも可愛くて愛嬌のある赤ちゃんを生んだアイルランド人のグレインさんとネイサンさんのエバンスさん夫妻。夫妻は、彼らの娘と同じ症状を持つ胎児の人工中絶を薦める医者からのアドバイスを読み、愕然とした。
そこで、エバンスさん夫妻は彼らのストーリーを公表することに決めた。同じような困難に直面している人々に希望を与えるために。ベルファスト・テレグラフが報じた。
テッサちゃんは無鼻症という、近年の医学文献では47件しか報告されていない、とても珍しい難病を持って生まれてきた。
鼻がないのに加えて、テッサは視力にも問題を抱えている。
エバンス一家が開設した、手術費用を集めるためのウェブページによると、彼女は生まれて11週目に左目の視覚を取り戻すための手術を受けたが、術後に左目の視力は完全に失われてしまった。
右目を使って視ることはできるという。
ただ、この一家が抱えている最大の障壁は、18カ月になったテッサちゃんの健康状態とは全く関係のないものである。
エバンスさん一家は正確な情報を入手できないことに対して非常に動揺したという。
以前、エバンスさん夫妻はある外科医が寄稿した、無鼻症の赤ちゃんに関する記事を読んでとても落胆した。
その記事では「この病気を持つ赤ちゃんの精神的・肉体的な能力はとても低く、中絶することが最も望ましい」と書かれていた。
グレインさんはテレグラフに対して、「いろんな意味で間違っています」と語った。
テッサちゃんはロンドンのグレートオーモンド・ストリート病院で世界初となる、鼻の型を挿入する手術を受けることになっている。
治療費は保険が適用されるものの、エバンス一家はロンドンまでの旅費など多額の費用を負担しなければならない。一家は金銭的負担を和らげるために費用調達の活動を開始し、これまでに600ポンド（約1,000ドル）を調達した。
テッサちゃんの寄付を集めるだけの目的で、彼らはテッサちゃんの病気を公表したわけではない。
エバンスさん夫妻は無鼻症を持つ他の人と繋がりを持ち、より信頼性のある研究の発表に期待し、同じ症状と生きる人々に希望を与えたいという。
「今年は私たちの小さな赤ちゃんがこんな経験をしているのを見て、これは彼女にとってほんの始まりに過ぎないということを信じられなく思ったり、時に胸が張り裂けそうになったりします」テッサちゃんの両親は資金集めのページでそう書いている。
「彼女は既に多くのことを乗り越えてきました。成長するにつれて、私たちの勇敢な女の子は彼女がいかに並外れて素晴らしいかを教えてくれています。彼女は周囲の期待を超えて、すべての困難を乗り越え、出会う全ての人のハートを奪うのです」
テッサちゃんの応援をしたい場合は、エバンス一家の寄付集めについてこちらでくわしい情報を得ることができる。
［Eleanor Goldberg (English) Translation by Gengo］
Love In One Photo
(01 of84)
\"I took this on Christmas because we wanted to give everyone a photo as a present, but I spotted the tree a few weeks before and envisioned the photo at that moment as well. I setup my camera on a tripod, but wanted the picture to look as flat as possible so I placed it about 50 yards away from the tree. I thought I was going to be able to get the shot on one take and had the cameras timer maxed out at 10 seconds. It took me 5 tries. I was so winded by the last shot, but that was the one. To see the look on Jades face when I make something for her is greatest. So perfect.\" - Dustin Safranek
(02 of84)
\"This is my Valentine gift to my husband.\" - Rani Rauniar
(03 of84)
\"At our pre-wedding photoshoot 2 years ago.\" - Nike and Bayo
(04 of84)
\"This is my fiancee Rossella and I on our way back home to San Francisco after a night of celebrating a friend\'s new job in Berkeley. She is the greatest comfort and joy I have ever known, and I think the expression on my face captures it.\" - PJ Barry
(05 of84)
\"Lindsey and Nick: a couple with special needs on their wedding day.\" - Linda Atwell, Out One Ear
(06 of84)
\"Our first trip together to the Telluride Film Festival. Margaret and I have been married 8 blissful years as of January 13.\" - Danny Lee Ladely
(07 of84)
\"True love is carrying your girlfriend down a mountain when she wears the worst hiking shoes ever...even after \'he told me so\'\" - Paula & Osmar
(08 of84)
\"Our first dance at our December 1st wedding.\" - Mia Aquino
(09 of84)
\"My fiancé Cecelia and I are waiting for the music and partaking in our second favorite pastime: trying not to botch a self-portrait.\"\n-Tom Gaines
(10 of84)
Submitted by Carrie Burns
(11 of84)
\"This is my husband and I on our wedding day. My favorite picture from the day. Yes, he wore a kilt.\" - Adele Flaherty
(12 of84)
\"My fiancé (Chris) and I, from our engagement shoot. We\'re getting married in May. I absolutely love this photo!\" - Gretchen J. Wolf
(13 of84)
\"With my fiance, Kusum, sharing an intimate moment together. What it\'s all about.\" - Nitish
(14 of84)
\"The way my husband is looking at me, shows how in love we are.\" - Ashley Cohen-Lewe
(15 of84)
Submitted by Dena Lopez.
(16 of84)
\"Our 20th wedding anniversary. Best 20 years of my life. Going to try for another 20!\" - Cheryl Smith Rizk
(17 of84)
\"This photo was taken of me and my partner 14 years ago ... and we are still waiting for our relationship to be legally recognized in all the states. However, that has not stopped us from becoming doting grandmothers, or from overcoming many of the same challenges, hurdles, and tough times as any of our family and friends have.\" - Debra & Deborah
(18 of84)
Submitted by April LaMon
(19 of84)
\"Our wedding day.\" - Brooke Johnson Delk
(20 of84)
\"Here is the photo I think shows the love I have for my husband! I was singing along to him while we had our first dance... (Turning Pages - Sleeping at Last).\" - Brianne Geiger
(21 of84)
\"We had no idea the picture was taken until the next morning.\" - Amy Nagrodzki
(22 of84)
\"With you there is nothing I can not do!\" - Shannelle Armstrong Fowler
(23 of84)
\"This is from the early stages of our relationship last summer, when our friends kept catching us \'staring into each other\'s eyes.\' We couldn\'t keep our hands off of each other.\" - Jon & Bethany
(24 of84)
\"My little bride was just being herself, taking time to smell the roses, when I whipped out my cell and snapped this candid shot.\" - Tom Collins
(25 of84)
\"Danielle and Jason Parker, Dec 20th, 2004, St. John, U.S.V.I.\" - Danielle Parker
(26 of84)
\"This is from our wedding five years ago, Jan. 12, 2008. Never have our vows \'in sickness and in health\' been truer. My husband, Phillip, started chemo this week for Stage IV Leukemia and I\'ve never loved him more.\" - Jessica Efron Sauer
(27 of84)
\"Coldplay\'s my favourite group. So this is three of my favourite things: My boyfriend \'M\', Coldplay & lights. He asked me out this night. 4th Dec 2011. Manchester, MEN Arena, England.\" - Patrick Ellis
(28 of84)
\"We were in a long distance relationship for over a year, David in Berlin, Germany and me in Brooklyn. We spend every cent we had on plane tickets to visit each other every other month for over a year, taking turns going back and forth. We finally decided enough was enough and I picked up and moved to Berlin to be with him. We were MARRIED on October 26th, 2012 at the City Hall in Copenhagen, Denmark. Every day since has been one of the best days of my life.\" - Joe Cooper
(29 of84)
Submitted by Nicole J. Richardson.
(30 of84)
\"[Our] 16th wedding anniversary at St. Pats, still crazy about each other!\" - Deirdre Yack
(31 of84)
Submitted by Jenny Waggenheim.
(32 of84)
\"Here is a picture of me and my boo on our wedding day. He still captures my heart.\" - Kara Williams
(33 of84)
\"Neil has made my cheeks hurt since the day I met him. There is laughter in our house every day. He has changed my world and I can\'t wait to marry him on June 14, 2013.\" - Melissa Bupp
(34 of84)
\"This is my fiance Troy. I think this photograph captures \'Love In One Photo\' because this is looking at him through my eyes when he doesn\'t know I\'m watching him. My heart skips a beat because he made me the happiest I\'ve ever been when he asked me to marry him last summer.\" - Kimberly Malott
(35 of84)
\"Our winter wedding day (Jan. 6, 2013) in Chicago.\" - Julia Nissim
(36 of84)
\"The photo was just taken by my cousin we were not even paying attention, she took it because she said we were always touching.\" - Gabrielle Morales
(37 of84)
Submitted by Mini Hutson-Montoya.
(38 of84)
Submitted by Andrea Marie Luistro.
(39 of84)
\"In this photo John and I are feeding the geese along a waterway in the Netherlands, when a dangerous biting swan came along pushing everyone out of the way, coming for us (we\'d both been bitten prior by this guy). I\'m letting John know to watch out, protecting him from the deadly swan!\" - Patty Webster
(40 of84)
\"Our \'first look\' before our wedding ceremony.\" - Jessica Armour
(41 of84)
\"It\'s not true for us that the higher you climb in love, the further you fall.\" - Dana Britt
(42 of84)
\"Ian and Emily’s love summed up in one photo!\" - Emily Beaulac
(43 of84)
\"This to me is the model of love. My Grandparents walking arms around each other.\" - Lisa MacGregor
(44 of84)
\"Roy and Linda Peay, married since 1990.\" - Linda Peay
(45 of84)
\"My husband and I are unknowingly captured in the background at my friend\'s wedding.\" - Robyn Atkinson
(46 of84)
\"This photo is at our wedding day, our daughter ran up to be with us at the altar.\" - Amanda Oberhaus
(47 of84)
@jenehirchiou: Our Wreck The Dress Shoot
(48 of84)
@GulfShoresGirl1: because through sickness n health I\'m there IN the bed no matter what germs lurk #lovehim
(49 of84)
@claudiaamigo73: Here\'s one of us taken 5 yrs ago, we´ve got our fingers crossed for marriage equality
(50 of84)
@tristakronfuss: After our wedding, we took pictures in the Snake River by Jackson Hole, WY
(51 of84)
@sarahgarvey16: husband & I during our 1st look photos on our wedding day. middle school sweethearts
(52 of84)
@jenny_rauch: Floor full of people, could easily just be the two of us
(53 of84)
@victoriafemme: my man wearing matching ugly sweaters with our cat
(54 of84)
@TattooShan40: Glen & Shannon Landgren married 6/27/2011
(55 of84)
@kevinpflynn: I make her laugh every day
(56 of84)
@awhooker: Yes! Here\'s me and my fiancé :D
(57 of84)
@DanielleDAli: After our wedding rehearsal at my parents\' house. So excited, hopeful, in love
(58 of84)
Submitted by @LisaWinslow
(59 of84)
@MeanMrsM: this moment embodies our hippie love. 6 years later I pray it will only continue to get sweeter
(60 of84)
@strugasaurasrex: My husband\'s last home football game in college. Moment perfectly timed
(61 of84)
@quixee: This moment after our ceremony… so perfect I felt like asking “is this real life?”
(62 of84)
@alwaysgrumpy712: Me and @Ginger_nut11
(63 of84)
@sugarandbrine: My husband & me, during our 10th anniversary vow renewal
(64 of84)
Submitted by @sheens311
(65 of84)
@RueDanylewich: Oct. 2000
(66 of84)
Submitted by @ldschibi
(67 of84)
Submitted by @YahiaLababidi
(68 of84)
@DeeOrmsby: #24yearstogether #18yearsmarried and counting
(69 of84)
@ImANancyGirl: 3 years and going strong :)
(70 of84)
@MsJackaLynnD: being goofy & smiling big. Our big day was all jokes & silly faces--just like us
(71 of84)
@goodniteny: my parents first married
(72 of84)
@MissKCotton: always laughing
(73 of84)
Submitted by @Anonymous_Vex
(74 of84)
Submitted by @manda_marie10
(75 of84)
Submitted by @rfarr_out
(76 of84)
@samantha_rocci: our NYE kiss! Amazingly perfect night!
(77 of84)
Submitted by @ifthemoondidnot (credit:Cyrience Creative Studios)
(78 of84)
\"Doesnt get any better than this!\" - Brandi Floyd (credit:Brandi Floyd)
(79 of84)
\"This was the New Year\'s Eve before our wedding [in 1993]...still so in love!\" - Veronica Perina
(80 of84)
\"Our first Derby day together!\" - Katie Watkins-Brandt
(81 of84)
Submitted by Mary Beth Bott
(82 of84)
\"Two of my best friends in Chicago.\" - Daniel Camacho
(83 of84)
Submitted by Lauren Harkness.
(84 of84)
\"This is a photo of me and my amazing boyfriend Kip. We were at a wedding in Mexico. I\'m on the raised dancefloor and he\'s down in the sand. His best friend took this photo as a candid, we had no idea he was taking it, to tease us about how lovey we were being. It is now my favourite photo we\'ve ever taken. I love him so much and you can absolutely see that on our faces. Pure bliss.\" - Stephanie Tucker
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