Noho nā kamaliʻi me MS, kekahi: moʻolelo o hoʻokahi ʻohana

Anter

• Ka huakaʻi i kahi hōʻailona
• Hoʻomaka ka lapaʻau ʻana
• ʻIcelelo aʻoaʻo no nā ʻohana ʻē aʻe
• Ke loaʻa nei ke kākoʻo ma ke kaiāulu MS
• Ke ʻimi nei i nā ala e hoʻohui i ka leʻaleʻa
• Ke hana ʻana i nā koho nohona olakino ma ke ʻano ʻohana
• He kime a paʻa pū
• ʻO ka lawe lawe ʻana

I ka lumi lumi ʻohana Valdez aia kahi papaʻaina i ahuʻu kiʻekiʻe me nā ipu o kahi mea gooey waihoʻoluʻu. Ke hana nei i kēia "slime" kahi punahele punahele a Aaliyah he 7 mau makahiki. Hana ʻo ia i kahi pūʻulu hou i kēlā me kēia lā, me ka hoʻohui ʻana i ka ʻōlinolino a me ka hoʻāʻo ʻana i nā kala like ʻole.

"He like ia me putty akā kikoo aku ia," i wehewehe ʻo Aaliyah.

Hele ka goo i nā wahi āpau a hoʻokele i ka makuakāne o Aaliyah, ʻo Taylor, he pupule iki. Ua pau ka ʻohana i nā ipu Tupperware: piha lākou i ka slime. Akā ʻaʻole ia e haʻi iā ia e kū. Manaʻo ʻo ia he therapeutic paha ka hana no ka mea ʻo Aaliyah e noʻonoʻo a pāʻani me kona mau lima.

I ka makahiki 6, ua ʻike ʻia ʻo Aaliyah me ka sclerosis (MS). I kēia manawa, hana kona mau mākua, ʻo Carmen lāua ʻo Taylor, i nā mea āpau e hiki ai iā lāua ke hōʻoia i ke olakino o Aaliyah a he keiki hauʻoli a ʻeleu hoʻi kāna. Pākuʻi ʻia i ka lawe ʻana iā Aaliyah no nā hana leʻaleʻa ma hope o kāna mālama ʻana iā MS a me ka ʻae ʻana iā ia e hana i nā kahe slime.

ʻO MS kahi ʻano i pili ʻole me nā keiki. ʻO ka hapa nui o ka poʻe e noho nei me MS e ʻike ʻia ma waena o nā makahiki 20 a 50, e like me ka National MS Society. Akā pili pinepine ʻo MS i nā keiki ma mua o ka noʻonoʻo. I ka ʻoiaʻiʻo, kahakaha ka Cleveland Clinic i ke ʻano o ke kamaliʻi MS a hiki i ka 10 pākēneka o nā hihia āpau.

"I ka manawa i haʻi ʻia mai iaʻu iā MS ua pīhoihoi wau. Ua like wau, 'ʻAʻole, ʻaʻole loaʻa nā keiki iā MS.' He paʻakikī loa ia, "haʻi ʻo Carmen iā Healthline.

ʻO ia ke kumu i hoʻokumu ai ʻo Carmen i kahi Instagram no Aaliyah e hāpai i ka ʻike e pili ana i ka wā kamaliʻi MS. Ma ka moʻokāki, kaʻana like ʻo ia i nā moʻolelo e pili ana i kā Aaliyah mau hōʻailona, ​​mālama, a me ke ola o kēlā me kēia lā.

"ʻO wau wale nō i kēia makahiki holoʻokoʻa e noʻonoʻo nei ʻo wau wale nō i ka honua i loaʻa kahi kaikamahine i kēia ʻōpio me MS," i ʻōlelo ʻo ia. "Inā hiki iaʻu ke kōkua i nā mākua ʻē aʻe, nā makuahine ʻē aʻe, ʻoi aku koʻu hauʻoli i ka."

ʻO ka makahiki mai ka hōʻoia ʻana o Aaliyah he paʻakikī ia no Aaliyah a me kona ʻohana. Ke hāʻawi nei lākou i kā lākou moʻolelo e hoʻolaha i ka ʻike e pili ana i ka ʻoiaʻiʻo o pediatric MS.

Ka huakaʻi i kahi hōʻailona

ʻO ka ʻōuli mua o ko Aaliyah ʻano puʻupaʻa, akā ʻo nā ʻōuli he nui i ʻike ʻia i ka hala ʻana o ka manawa. Ua ʻike kona mau mākua ua ʻano haʻalulu ʻo ia ke ala lākou iā ia i kakahiaka. A laila, i kekahi lā i ka pāka, ua hina ʻo Aaliyah. Ua ʻike ʻo Carmen ke huki nei ʻo ia i kona wāwae ʻākau. Ua hele lākou i kahi manawa lapaʻau a ua ʻōlelo ke kauka iā Aaliyah e loaʻa i kahi ʻōpū liʻiliʻi.

Ua kū ʻo ʻAaliyah i ka huki ʻana i kona wāwae, akā ma kahi o ʻelua mau mahina, ua ʻike ʻia kekahi mau ʻōuli ʻē aʻe. Hoʻomaka ʻo ia e hina i ke alapiʻi. Ua ʻike ʻo Carmen ua haʻalulu nā lima o Aaliyah a ua paʻakikī ʻo ia i ke kākau ʻana. Ua wehewehe kahi kumu i kahi manawa ke hele a huikau ʻo Aaliyah, me he mea lā ʻaʻole ʻo ia i ʻike ma hea ʻo ia. I kēlā lā hoʻokahi, ua lawe kona mau mākua iā ia e ʻike i ke kauka keiki.

Paipai ke kauka ʻo Aaliyah i ka hoʻokolohua neurological - akā ma kahi o hoʻokahi pule ka loaʻa ʻana o kahi manawa. ʻAe ʻo Carmen lāua ʻo Taylor, akā i ʻōlelo inā hele a hewa nā hōʻailona, ​​e hele pololei i ka haukapila.

I loko o kēlā pule, ua hoʻomaka ʻo Aaliyah e lilo i kāna kaulike a hāʻule, a ua namunamu ʻo ia no ka ʻeha poʻo. "Ma ka noʻonoʻo, ʻaʻole ʻo ia iho," i hoʻomanaʻo ai ʻo Taylor. Lawe lākou iā ia i ka ER.

Ma ka haukapila, ua kauoha nā kauka i nā hoʻokolohua ke ʻoi aku ka maikaʻi o nā ʻōuli o Aaliyah. Ua ʻike ʻia kāna mau hoʻāʻo āpau he maʻamau, a hiki i ka piha ʻana o ka MRI scan o kona lolo i hōʻike ʻia nā leona. Ua haʻi aku kahi neurologist iā lākou ua loaʻa paha iā Aaliyah ka MS.

"Ua nalowale ko mākou ʻano," hoʻomanaʻo ʻo Taylor. "He ʻano e like me ka hoʻolewa. Hele mai ka ʻohana holoʻokoʻa. ʻO ia wale nō ka lā ʻino o ko mākou ola. ”

Ma hope o ko lākou lawe ʻana iā Aaliyah i ka home mai ka haukapila, ua ʻōlelo ʻo Taylor ua nalowale lākou. Ua hoʻolōʻihi ʻo Carmen i mau hola e ʻimi nei i ka ʻike ma ka pūnaewele. "Ua paʻa koke mākou i ke kaumaha," i haʻi aku ai ʻo Taylor iā Healthline. "He mea hou mākou i kēia. ʻAʻole mākou i ʻike. ”

I ʻelua mau mahina ma hope mai, ma hope o ka scan MRI hou, ua hōʻoia ʻo Aaliyah's MS diagnose a ua hāʻawi ʻia iā Kauka Gregory Aaen, kahi loea ma Loma Linda University Medical Center. Ua kamaʻilio ʻo ia me ka ʻohana e pili ana i kā lākou koho, a hāʻawi iā lākou i nā puke liʻiliʻi e pili ana i nā lāʻau i loaʻa.

Ua paipai ʻo Kauka Aaen e hoʻomaka koke ʻo Aaliyah i ka lāʻau no ka hoʻolohi i ka holomua o ka maʻi. Akā ua haʻi pū ʻo ia iā lākou hiki iā lākou ke kali. Hiki paha iā Aaliyah ke hele lōʻihi me ka ʻole o ka hoʻouka hou ʻana.

Ua hoʻoholo ka ʻohana e kali. ʻO ke kūpono no nā hopena ʻino maikaʻi ʻole e like me ka nui o kekahi e like me Aaliyah.

Ua ʻimi ʻo Carmen i nā hoʻoponopono kōkua kōkua e kōkua ai paha. No kekahi mau mahina, ua maikaʻi ʻo Aaliyah. "He lana ko mākou manaʻo," wahi a Taylor.

Hoʻomaka ka lapaʻau ʻana

Ma kahi o ʻewalu mau mahina ma hope, ua hoʻopiʻi ʻo Aaliyah e pili ana i ka "ʻike ʻana i ʻelua o nā mea āpau," a hoʻi ka ʻohana i ka haukapila. Ua ʻike ʻia ʻo ia me ka neuritis optic, kahi ʻōuli o MS kahi e wela ai ke aʻalolo optic. Ua hōʻike kahi loiloi lolo i nā liona hou.

Ua koi aku ʻo Kauka Aaen i ka ʻohana e hoʻomaka iā Aaliyah ma kahi lāʻau. Ua hoʻomanaʻo ʻo Taylor i ka manaʻolana o ke kauka e lōʻihi ana ke ola o Aaliyah a maikaʻi, ʻoiai ke hoʻomaka nei lākou e hakakā i ka maʻi. "Ua lawe mākou i kona ikehu a ʻōlelo," OK, pono mākou e hana i kēia. "

Ua paipai ke kauka i kahi lāʻau e koi ai iā Aaliyah e loaʻa i kahi infus he ʻehiku hola i hoʻokahi manawa i ka pule no ʻehā mau pule. Ma mua o ka mālama mua ʻana, hāʻawi nā kahu maʻi iā Carmen lāua ʻo Taylor me ka hōʻike o nā pilikia a me nā hopena ʻaoʻao.

"He mea weliweli wale ia no nā hopena a i ʻole nā ​​mea e hiki ke hiki," i ʻōlelo ʻo Taylor. "Ua uē mākou, ʻelua o mākou."

Ua ʻōlelo ʻo Taylor ua uē ʻo Aaliyah i kekahi manawa i ka wā o ka lapaʻau ʻana, akā ʻaʻole hoʻomanaʻo ʻo Aaliyah i ka huhū. Hoʻomanaʻo ʻo ia i nā manawa like ʻole makemake ʻo ia i kona makuakāne, a i ʻole kona makuahine, a i ʻole kona kaikuahine e paʻa i kona lima - a ua hana lākou. Hoʻomanaʻo pū ʻo ia ua pāʻani ʻo ia i ka hale a holo i ke kaʻa ma ke keʻena kali.

Ma mua o hoʻokahi mahina ma hope, ke holo maikaʻi nei ʻo Aaliyah. "ʻEleu loa ʻo ia," i haʻi aku ai ʻo Taylor iā Healthline. I ke kakahiaka, ʻike mau ʻo ia i kahi haʻalulu, akā ua ʻōlelo hou "i ka lā holoʻokoʻa, ke hana maikaʻi nei ʻo ia."

ʻIcelelo aʻoaʻo no nā ʻohana ʻē aʻe

Ma o nā manawa paʻakikī mai ka hōʻoia ʻana o Aaliyah, ua ʻike ka ʻohana Valdez i nā ala e noho ikaika ai. "ʻOkoʻa mākou, kokoke mākou," haʻi ʻo Carmen iā Healthline. No nā ʻohana e kū nei i kahi maʻi MS, lana ka manaʻo ʻo Carmen lāua ʻo Taylor he kōkua kā lāua ʻike iho.

Ke loaʻa nei ke kākoʻo ma ke kaiāulu MS

Ma muli o ka ʻano maʻamau o ka wā kamaliʻi MS, ua haʻi ʻo Carmen iā Healthline he paʻakikī i ka wā mua ke loaʻa ke kākoʻo. Akā ua kōkua i ke komo ʻana i ke kaiāulu MS ākea. I kēia mau lā wale nō, ua komo ka ʻohana ma Walk MS: Los Angeles Nui.

"Nui ka poʻe ma laila me nā vibe maikaʻi he nui. ʻO ka ikehu, ʻoluʻolu ka lewa āpau, "wahi a Carmen. "Ua hauʻoli mākou āpau ma ke ʻano he ʻohana."

ʻO ke kaiaulu kaiaulu kahi mea e kākoʻo ai. Ma o Instagram, ua pili ʻo Carmen me nā mākua ʻē aʻe he keiki ʻōpio me MS. Kaʻana like lākou i ka ʻike e pili ana i ka mālama ʻana a me ka hana a kā lākou keiki.

Ke ʻimi nei i nā ala e hoʻohui i ka leʻaleʻa

Ke loaʻa nā koho a Aaliyah no nā hoʻāʻo a i ʻole nā ​​mālama ʻana, ʻimi kona mau mākua i kahi ala e hoʻohui i kahi leʻaleʻa i ka lā. Hele paha lākou i waho e ʻai a ʻae iā ia e koho i kahi mea pāʻani hou. "Hoʻomaʻo pinepine mākou e hana i mea leʻaleʻa nona," wahi a Carmen.

I mea e hoʻonui ai i ka leʻaleʻa a me ka hana, ua kūʻai ʻo Taylor i kahi kaʻa e hiki ai iā ʻAaliyah a me kona kaikunāne ʻehā makahiki ke holo pū. Kūʻai ʻo ia iā ia me Walk: MS i ka manaʻo, inā ua luhi a puʻupuʻu paha ʻo Aaliyah, akā manaʻo ʻo ia e hoʻohana lākou ia mea no nā huakaʻi ʻē aʻe. Hoʻokomo ʻo ia iā ia me kahi aka e pale i nā keiki mai ka lā.

Loaʻa iā Aaliyah kahi ʻenemi mea pāʻani hou i loaʻa iā ia mai iā Mr. Oscar Monkey, kahi hui waiwai ʻole i hoʻolaʻa ʻia e kōkua i nā keiki me MS e pili pū kekahi me kekahi. Hāʻawi ka hui i nā "mony MS," i ʻike ʻia ma ke ʻano he mau hoa aloha ʻo Oscar, i kēlā me kēia keiki me MS e noi ana i hoʻokahi. Ua kapa ʻo ʻAaliyah i kona inoa ʻo ka mōʻī ʻo Hana. Makemake ʻo ia e hulahula me ia a hānai i kāna ʻāpala, ka meaʻai punahele a Hana.

Ke hana ʻana i nā koho nohona olakino ma ke ʻano ʻohana

ʻOiai ʻaʻohe papaʻai kikoʻī no MS, ʻo ka ʻai pono ʻana a me ke ola ʻana i kahi nohona olakino hiki ke lilo i mea kōkua na kēlā me kēia kanaka me kahi maʻi maʻamau - me nā keiki.

No ka ʻohana Valdez, ʻo ia ka pale ʻana i ka meaʻai wikiwiki a me ka hoʻohui ʻana i nā mea momona i nā meaʻai. "ʻEono kaʻu mau keiki a he picky lākou a pau, no laila ʻano hūnā wau i nā mea ʻai i laila," wahi a Carmen. Hoʻāʻo ʻo ia e kāwili i nā lauʻai e like me ka milo i loko o ka meaʻai, a me ka hoʻohui ʻana i nā mea ʻala e like me ka ginger a me ka turmeric. Ua hoʻomaka lākou e ʻai i ka quinoa ma kahi o ka laiki.

He kime a paʻa pū

Ua ʻōlelo ʻo Taylor lāua ʻo Carmen he mau ikaika like ʻole kā lāua e pili ana i ka mālama ʻana i ke kūlana o Aaliyah. Ua hoʻolimalima lāua ʻelua me Aaliyah ma ka haukapila a ma nā wā a ke kauka, akā ʻo Taylor ka makua ma kona ʻaoʻao pinepine i ka wā o nā hoʻokolohua paʻakikī. ʻO kahi laʻana, hōʻoluʻolu ʻo ia iā ia inā makaʻu ʻo ia ma mua o kāna MRI. ʻO Carmen, ma ka ʻaoʻao ʻē aʻe, pili pū me ka noiʻi ʻana iā MS, ke kamaʻilio pū ʻana me nā ʻohana ʻē aʻe, a me ka hoʻonui ʻana i ka ʻike e pili ana i ke ʻano. "Hoʻopiha maikaʻi mākou i kekahi i kekahi i kēia kaua," wahi a Taylor.

ʻO ke kūlana o ʻAaliyah i lawe mai i kekahi mau loli no kona mau kaikaina. Ma hope pono o kāna kuhi, ua noi ʻo Taylor iā lākou e mālama maikaʻi iā ia a ahonui me ia. Ma hope, ua aʻoaʻo ka poʻe loea i ka ʻohana e mālama iā Aaliyah e like me ka maʻamau, i ulu ʻole ʻo ia i ka pale. Ke hoʻokele nei ka ʻohana i nā loli, akā ua ʻōlelo ʻo Carmen ma ka hapanui, hakakā ka liʻiliʻi o kā lākou keiki ma mua o ka wā i hala. Ua hoʻohui ʻo Taylor, "Ua hana ʻokoʻa nā mea āpau me ia, akā ʻo mākou āpau me ia."

ʻO ka lawe lawe ʻana

"Makemake wau i ka honua e ʻike i kēia keiki e loaʻa iā MS," i ʻōlelo ʻo Carmen iā Healthline. ʻO kekahi o nā pilikia a ka ʻohana i kū ai i kēia makahiki, ʻo ia ka manaʻo o ke kaʻawale i hele mai me ka hōʻailona Aaliyah. Akā ʻo ka hoʻopili ʻana me ke kaiāulu MS nui aku he ʻokoʻa. Ua ʻōlelo ʻo Carmen e hele ana i Walk: Ua kōkua ʻo MS i ka ʻohana e hōʻemi iki iā lākou iho. "ʻIke ʻoe i ka nui o nā poʻe i loko o ke kaua like me ʻoe, no laila ua ikaika ʻoe," i hoʻohui ʻia. "ʻIke ʻoe i ke kālā a lākou e ʻohi nei, no laila lana ka manaʻo i kekahi lā e hoʻōla ʻia."

I kēia manawa, ua haʻi ʻo Taylor iā Healthline, "Lawe mākou i hoʻokahi lā i ka manawa." Nānā nui lākou i ke olakino o Aaliyah, a me ke olakino o kona mau kaikaina. "Mahalo au i kēlā me kēia lā a mākou e hui pū ai," i hoʻohui ai ʻo Taylor.