Yadda ake samun yaro da ke fama da cutar rashin ƙwaƙwalwa da Down Down ya canza rayuwar dutsen

Mawaki ɗan Irish na arewacin Ireland Cormac Neeson ya ce samun ɗa da cutar ta Down syndrome ta canza rayuwarsa cikin "farin ciki da sahihanci".

A cikin 2014 Neeson ya yi mafarki na dutse 'n' mirgine a hanyoyi da yawa. Bandungiyar sa, Amsar, ta sayar da ɗaruruwan dubban bayanan rikodin kuma sun zagaya duniya tare da kwatankwacin The Rolling Stones, The Who da AC / DC.

Amma duniyar mawaƙa ta cika da damuwa lokacin da matarsa, Louise, ta haifi ɗa wanda ya riga ya girma a cikin makonni 27 kawai.

“Lokaci ya yi duhu da ba wuya,” in ji Neeson.

An haifi ɗan su, Dabhog da nauyin 0,8 kg kuma yana cikin kulawa mai zurfi. Ya ci gaba da kasancewa a asibiti a cikin Belfast na tsawon watanni huɗu.

Neeson ya kara da cewa "A mafi yawan wannan lokacin, ba mu da tabbas kan abin da ya shafi yau da kullun idan zai yi hakan."

Makonni biyu bayan haka, sun fuskance labarai cewa Dabhog yana da cutar sankarar mahaifa, yanayin halittar da ke shafar iyawar mutum na koyo.

"Wannan wani abu ne wanda ya kara haɓakawa da ƙima sosai."

Dabhog ya samu aikin tiyata tun yana da shekara 1
A wancan lokacin Amsar ta fito da wani kundin hoto.

"Ya kamata in fita daga cikin incubator na minti 20 ko 30 kuma in yi tambayoyi don inganta kundin.

"Dole ne in yi kamar ina cikin wani wuri da na ji dadi in sake sakin kiɗan 'n' nishaɗi don nishaɗi. Gaba daya abin ya faru ne a kaina, ”in ji Neeson.

Dabhog ya rayu kuma an sallame shi daga asibiti, kodayake dole ne a yi masa tiyata tun yana dan shekara daya don ya gyara rami a zuciyarsa.

Abubuwan da suka faru suna da tasiri sosai akan hangen nesa na Neeson na rayuwa da kiɗan sa.

"Duk lokacin da kura ta zauna kuma Dabho yana gida kuma lafiyarsa ta fara canzawa kuma rayuwa ta sami nutsuwa sai na fahimci cewa ba a wani wuri ba wanda zan iya rubuta irin kidan da muka kashe a cikin shekaru 10 da suka wuce na rubutu, ”in ji shi.

Ya je Nashville inda ya yi aiki tare da mawakan mawakan Amurka da mawaƙa don haɗa sabbin kiɗa. "Sakamakon wannan shi ne tarin waƙoƙi waɗanda ba su da wata ma'ana, masu ban tsoro da gaske kuma za su iya kasancewa wani ɓangare na aikin solo kawai.

"Duniya ce da ta wuce abubuwan da na yi amfani da ita na kirkirar har zuwa wannan lokacin."

Sunan kundin kundin silke na Neeson, White Feather, ya samo asali ne daga wani taron a lokacin da matar ke ciki
Daya daga cikin waƙoƙin, Broken Wing, kyauta ce ga Dabhog.

Neeson ya ce, "dama ce mai kyau don tattaunawa game da cutar rashin lafiyar da ke tattare da cutar rashin lafiyar da ke tattare da cutar Down Down, amma kuma don murnar yadda na ke.

Ta ce tana so ta shawo kan wakar cewa renon yara masu nakasa koyon ilmin suna da tsari na musamman, amma "ya banbanta ta hanya mai girma da karfi."

Neeson ya yi ikirarin cewa shi ma ya rubuta wakar ne don taimakawa sababbin iyayen yaran da ke da cutar Down.

"Ina dawowa asibiti duk lokacin da aka gaya mana cewa Dabhog yana da cutar sankara kuma ina tunanin idan na ji wannan wakar to zan sami nutsuwa daga hakan."

“Idan yaranka suna da cutar rashin lafiya wacce ba ita ce ma'anar ɗanka ba. Jaririn ku na musamman da na musamman kamar kowane ɗan jariri. Ban taɓa haduwa da mutum kamar ɗana Dabhog ba.

"Irin farin cikin da ya kawo mana a rayuwarmu wani abu ne da ban iya hangowa ba yayin da muke damuwa da kullun game da lafiyarsa da kuma fitar da shi daga asibitin da rai."

Neeson yana da tambarin chromosome 21 a hannu. Mafi kyawun yanayin cututtukan Down shine trisomy 21, lokacin da akwai kwafi uku na wannan chromosome maimakon biyu
Sunan kundi, White Feather, nuni ne ga abin da ya faru tun farkon haihuwar Louise tare da Dabhog.

Kimanin makwanni uku ne aka gaya mata ita ce haihuwar ciki, lokacin da kwai ya hadu da ita a cikin mahaifa, galibi cikin bututun fallopian. Saboda haka kwai ba zai iya zama cikin jariri ba kuma dole ne a dakatar da daukar ciki saboda matsalar lafiyar mahaifiyar.

Bayan sun dauki Louise don yin tiyata, likitocin sun gano cewa ba mahaifar ba ce, amma sun ce sai sun jira sauran makwanni biyu kafin su iya yin bugun zuciya sannan su tabbatar idan har yanzu jaririn yana raye. .

A daren da aka fara binciken, Neeson ya yi tafiya shi kaɗai cikin duwatsun kusa da garinsu na Newcastle, County Down.

"Yawancin bincike na rai ya ci gaba. Na ce da ƙarfi: "Ina buƙatar wata alama". A lokacin ne aka dakatar da ni a cikin wayoyina. "

Ya hango farin gashin tsuntsu a cikin bishiyoyi. "A cikin Ireland, farin gashin tsuntsu yana wakiltar rayuwa," in ji Neeson.

Kashegari kwayar ta bayyanar da "bugun zuciya".

Amsar Neeson Amsar sun fito da kundin shirye-shirye guda shida
Dabhog yanzu yana da shekara biyar kuma ya fara makaranta a watan Satumba, inda Neeson ya ce ya sami abokai kuma ya sami satifiket na upan Makaranta.

"Don samun damar fahimtar rayuwarmu ta wannan hanyar da zama tare da sadarwa tare da kasancewa mai tabbatar da halayyar rayuwa kuma a gare shi ya kawo farin ciki mai yawa a rayuwarmu, ya kasance abin farin ciki a gare mu kuma muna godiya wannan, ”in ji Neeson.

Dabhog yanzu yana da ƙaramin brotheran uwan ​​kuma Neeson ya zama jakada don ƙaddamar da ƙwararrun nakasassu na nakasassu Mencap a arewacin Ireland. Dabhog ya halarci cibiyar Mencap a Belfast don ƙwararrun ilmantarwa da tallafin saƙo na farko.

"Kafin matata ta sami juna biyu da Dabhog, ina tsammanin kawai abin da na fi maida hankali a rayuwa shi ne kaina kuma ina tsammanin hakan ba zai zama mai son kai ba idan kana da yaro," in ji shi.

Koma baya ga shekarar 2014, ta kara da cewa: “Akwai wasu lokuta a rayuwar ku da ba ku san yadda za ku shawo kan wadannan matsalolin ba, amma kuna iyawa.

"Duk lokacin da kuka bijire wa wani gefen akwai tabbacin nasara kuma a nan muke yanzu."