He aha ka maʻi Batten? Nā mea e pono ai ʻoe e ʻike e pili ana i kāu keiki

I kekahi manawa, makaʻu loa mākou ke ʻike mākou i nā maʻi e hele mai ana i kā mākou poʻe liʻiliʻi, ʻeā? ʻOi loa aku inā ʻaʻole mākou i ʻike nui e pili ana i kēlā maʻi. I kēia lā, e kamaʻilio mākou e pili ana i kahi maʻi i laha iki, akā he mea pono iā mākou ma ke ʻano he mau mākua ke makaʻala. Ua kapa ʻia kēia ʻo Batten Disease.

I ka ʻōlelo maʻalahi, ʻo ka Maʻi Batten kahi hui o nā kūlana genetic e hoʻoulu ai i ka hōʻiliʻili ʻana o nā huahana ʻōpala i loko o nā hunaola lolo o kā mākou mau keiki. E like me ka ʻōpala e hōʻiliʻili ana i loko o ko mākou mau home inā ʻaʻole mākou e lawe i waho i ka manawa kūpono, ʻo ia ka mea e hana ʻia i nā hunaola lolo. Hoʻopōʻino kēia huahana ʻōpala i ke ʻano a me ka hana o nā hunaola lolo, kahi a nā kauka i kapa ai he neurodegeneration. I ka hopena, make kēia mau hunaola. He kūlana kaumaha loa kēia, no ka mea, he mea make ka Maʻi Batten.

Hiki i kāu kauka ke kapa i kēia maʻi ʻo "Neuronal Ceroid Lipofuscinosis (NCL)". ʻO ia ka inoa lapaʻau no ia mea.

Aia kekahi mau hōʻailona maʻamau i maʻamau i nā ʻano maʻi Batten āpau. No ka laʻana, nā hopu ʻana, ka nalowale mālie o ka ʻike, a me nā loli i ke ʻano o ka noʻonoʻo a me ke kumu o ke keiki (nā pilikia noʻonoʻo). Hiki ke hoʻomaka kēia mau hōʻailona i ka wā kamaliʻi, ka wā kamaliʻi, a i ʻole ka wā ʻōpio. ʻOi aku ka ʻino o kēia mau hōʻailona me ka ʻelemakule.

ʻAʻohe lāʻau lapaʻau piha no kēia, no laila hoʻāʻo nā kauka e kaohi i nā hōʻailona a hāʻawi i ke keiki i ke ʻano ola maikaʻi loa.

Aia kekahi mau ʻano like ʻole o ka maʻi Batten?

ʻAe, aia i kēia manawa he 14 mau ʻano maʻi Batten i ʻike ʻia. Ua hoʻokaʻawale ʻia kēia mau mea e like me ka makahiki e hoʻomaka ai nā hōʻailona. Hoʻomaka kekahi mau keiki e hōʻike i nā hōʻailona i ka wā kamaliʻi, ʻo kekahi i ka hopena o ka wā kamaliʻi, kekahi i ka wā kamaliʻi, a i ʻole i nā makahiki ʻōpio mua.

Hoʻomaka ka inoa o kēlā me kēia ʻano me nā leka ʻekolu ʻo CLN. ʻO ia hoʻi ʻo (Ceroid Lipofuscinosis, Neuronal). ʻO ia ka inoa o ka gene i hoʻopilikia ʻia. A laila hoʻohui ʻia kahi helu mai 1 a 14.

ʻO ka mea maʻamau o kēia ʻo ia ke ʻano i kapa ʻia ʻo CLN3. Ua kapa ʻia hoʻi kēia ʻo (juvenile Batten disease). Hoʻomaka pinepine nā hōʻailona o CLN3 ma waena o nā makahiki 5 a me 15.

Pehea ka laha ʻole o kēia maʻi?

He maʻi laha ʻole kēia. Wahi a nā kauka, ma kahi ʻāina e like me ʻAmelika, ʻo ka manawa kūpono o ka ulu ʻana o kēia maʻi ma kahi o 3 mai loko mai o 100,000 mau pēpē hānau hou. ʻO ia hoʻi, he mea laha ʻole loa ka ʻike ʻana i kēia maʻi ma Sri Lanka.

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He aha nā hōʻailona o ka maʻi Batten?

E like me kā mākou i ʻōlelo ai ma mua, ʻoiai he ʻano like ʻole o ka maʻi Batten, ʻo ka hapa nui o ka manawa he mea maʻamau nā hōʻailona. Eia nō naʻe, hiki ke ʻokoʻa ka makahiki e hoʻomaka ai kēia mau hōʻailona. ʻO nā hōʻailona mua e ʻike ʻia :

• Ke emi mālie nei ka ʻike.Malia paha ua pilikia kāu keiki i ka ʻike ʻana i nā mea, a i ʻole ʻike ʻoe e kuʻi mau ana lākou i nā mea.
• Nā loli koke i ke ʻano a me ke ʻano o ke keiki. Hiki iā lākou ke lilo i mea paʻakikī ma mua o ka wā ma mua, huhū maʻalahi, a nalowale paha ka hoihoi i nā mea a lākou i hauʻoli ai.
• Ka nalowale o ke kaulike a me ka paʻakikī i ka hoʻokele ʻana i nā lālā i ka wā e hele ana a holo paha (clumsiness). Me he mea lā e hāʻule mau ana ke keiki.
• Nā ʻōʻili.

Ma waho aʻe o kēia mau mea, hiki ke ʻike ʻia nā hōʻailona ʻē aʻe. ʻO lākou kēia:

• Ka emi ʻana o ka hiki ke noʻonoʻo, hoʻoholo, a hoʻomaopopo i kahi mea (hana cognitive)
• Paʻakikī i ka ʻōlelo ʻana. Hiki iā lākou ke lohi i ka hoʻomaka ʻana e ʻōlelo, hiki ke kūpikipikiʻō, a i ʻole e hana hou i nā huaʻōlelo a i ʻole nā ​​māmalaʻōlelo like.
• Nā haʻalulu, nā ʻūmiʻi ʻana o nā ʻiʻo me ka makemake ʻole (tics, muscle spasms), a i ʻole ka neʻe koke ʻana o kahi ʻāpana o ke kino (myoclonus).
• Ka paʻakikī i ka hoʻomanaʻo ʻana i nā hanana i hala, e like me ka nalowale ʻana o ka hoʻomanaʻo i ka wā ʻelemakule (dementia).
• ʻO ka ʻike ʻana a i ʻole ka lohe ʻana i nā mea i ʻike ʻole ʻia (hallucinations) a i ʻole ka hana ʻana ma waho o ka pilina me ka ʻoiaʻiʻo (psychosis).
• Nā pilikia hiamoe. Loaʻa paha iā ʻoe ka pilikia o ka hiamoe ʻana a i ʻole ke ala pinepine ʻana.
• ʻO ka paʻakikī a me ka paʻakikī o nā ʻiʻo, ka paʻakikī i ke kūlou ʻana a me ke kīkoʻo ʻana (ka spasticity muscle a me ka rigidity).
• Ua emi ka ikaika ma nā lima a me nā wāwae.
• Hiki ke loaʻa nā maʻi puʻuwai, e like me ka puʻuwai kūpono ʻole (arrhythmia), ʻoiai hoʻi i nā poʻe ʻōpio a me nā ʻōpio.

E noʻonoʻo, ulu mua nā keiki me ka maʻi Batten e like me nā keiki ʻē aʻe. Hele lākou i nā pae hoʻomohala āpau, e like me ke kolo ʻana, ka hele wāwae ʻana, ke kamaʻilio ʻana, a me ka ʻai ʻana iā lākou iho. Akā, a laila, i ka manawa koke, ua pau kēlā holomua, a poina iā lākou a ʻaʻole hiki ke hana i nā mea a lākou i aʻo ai. ʻOi loa aku i nā keiki nona nā hōʻailona e hoʻomaka ana i ka wā ʻōpiopio, e ʻoi koke ka maʻi.

No ke aha i loaʻa ai ka maʻi Batten? He aha ke kumu?

I ka ʻōlelo maʻalahi, ua hana ʻia kēia e kahi loli i loko o kā mākou mau genes, kahi mutation gene. ʻO kēia gene "CLN" ke kuleana no ka wāwahi ʻana a me ka wehe ʻana i nā huahana ʻōpala e hōʻiliʻili ana i loko o kā mākou mau cell. E like me ke kanaka nāna e lawe i ka ʻōpala i loko o ko mākou hale.

No laila, i ka wā e loaʻa ai kahi kīnā a i ʻole ka mutation i loko o kēia gene CLN, ʻaʻole hiki i ke kino o ke keiki ke hoʻopau pono i kēia ʻōpala cellular. A laila hoʻomaka kēia ʻōpala - ʻo ia hoʻi nā lipids, nā kō, nā protein, a me nā mea ʻē aʻe - e hōʻiliʻili i loko o nā cell. ʻO ka hapa nui o kēia ʻōpala e hōʻiliʻili i loko o nā cell lolo.

Ke hōʻiliʻili ʻia kēia ʻōpala, e pau ka hana pono ʻana o nā ʻāpana o ke kino o ke keiki. ʻAʻole hiki i ka ʻōnaehana nerve ke hana i kāna hana ma waena o kēia puʻu ʻōpala. ʻO ia ke kumu e ʻike ʻia ai kēia mau hōʻailona hoʻoweliweli ola.

He maʻi hoʻoilina anei kēia?

ʻAe, ʻo ka maʻi BattenHe maʻi metabolic hoʻoilina. ʻO ke ʻano kēia, i mea e loaʻa ai i kahi keiki ka maʻi, pono nā mākua ʻelua e lawe i ka mutation gene e hoʻoulu ai i ka maʻi. ʻO ke ʻano o nā mea lawe, ʻoiai ua loaʻa i nā mākua ka mutation, ʻaʻole lākou e loaʻa nā hōʻailona no ka mea hoʻokahi wale nō kope o ka gene iā lākou.

I loko o ka ʻepekema lapaʻau, ua kapa ʻia kēia he hoʻoilina "autosomal recessive". ʻO ke ʻano kēia, e loaʻa wale nā ​​​​hōʻailona i ke keiki inā loaʻa iā lākou ka gene kīnā mai ko lākou makuahine a me ko lākou makuakāne. Ua like ia me ka loaʻa ʻana o nā ʻaoʻao ʻelua o kahi tikiki lottery.

He aha nā pilikia e hiki mai ana o kēia maʻi?

He mea kaumaha maoli kēia. Hiki i nā pēpē, nā keiki, a me nā ʻōpio ke make koke mai ka maʻi Batten. E ʻoi aku ka ʻino o nā hōʻailona. No ka laʻana, ʻo ke keiki i nalowale iki ka ʻike i ka wā mua, hiki ke lilo i makapō loa. Eia kekahi, hiki i nā ʻiʻo ke nāwaliwali, e hiki ʻole ai ke hele, a i ka hopena hiki ke loaʻa ka maʻi lolo.

ʻO ka mea e hana ʻia, ke make nā ʻāpana, hōʻiliʻili nā huahana ʻōpala i loko o lākou, a ʻaʻole hiki i kēlā mau ʻāpana ke hana i kā lākou hana. Hoʻopilikia pū kēia i ke ʻano o ka hana ʻana o nā ʻōpū o loko o ke keiki. Ke loaʻa ʻole i nā ʻōpū ke kākoʻo e pono ai lākou mai nā ʻāpana, hiki ke loaʻa nā kūlana koʻikoʻi e like me ka hāʻule ʻana o nā ʻōpū.

Pehea e ʻike ai nā kauka i ka maʻi Batten?

Inā kānalua ke kauka i ka maʻi Batten, e nānā pono mua lākou i kāu keiki. E nīnau pū lākou iā ʻoe e pili ana i nā hōʻailona o kāu keiki a inā paha ua loaʻa i kekahi o kou ʻohana nā kūlana like. A laila, hiki iā lākou ke hana i kēia mau hoʻokolohua:

• Hoʻāʻo ʻana i ka genetics: Pili kēia i ka lawe ʻana i kahi liʻiliʻi o ke koko a i ʻole ka lawai o ke keiki a hoʻouna aku i kahi lab no ka hoʻāʻo ʻana. Ma laila, e nānā lākou i nā loli a i ʻole nā ​​​​​​mutation i loko o nā genes CLN i ʻōlelo mua ʻia i loko o ka DNA o ke keiki. ʻO kēia hoʻāʻo genetic wale nō ke ala e hōʻoia ai i ka loaʻa ʻana o ka maʻi Batten.
• Biopsy: Ma kēia hoʻāʻo, lawe ke kauka i kahi ʻāpana liʻiliʻi o ka ʻiʻo mai ka ʻili o kāu keiki a nānā iā ia ma lalo o kahi microscope. A laila hiki iā lākou ke nānā i nā hōʻiliʻili maʻamau ʻole o nā mea i kapa ʻia ʻo lipofuscins (nā waihona melemele-ʻeleʻele i hana ʻia me nā momona a me nā protein) i loko o nā ʻili ʻili.
• Hoʻokolokolo maka: No ka nānā ʻana i ke olakino o ka retina a me ke aʻalolo optic o ke keiki, hana ʻia kahi hoʻokolohua i kapa ʻia ʻo Electroretinography (ERG). Ana kēia i ke ʻano o ka pane ʻana o ka retina i ka mālamalama.

Eia kekahi, hiki ke hana ʻia nā hoʻokolohua koko ʻē aʻe a me nā hoʻokolohua kiʻi e hoʻoholo i nā kūlana ʻē aʻe e hiki ai ke hana i nā hōʻailona like.

Aia kekahi lāʻau lapaʻau no kēia?

E like me kā mākou i ʻōlelo ai ma mua, ʻaʻohe lāʻau lapaʻau piha no ka maʻi Batten.No laila, ʻo ka pahuhopu nui o nā kauka i ka mālama ʻana, ʻo ia ke kāohi i nā hōʻailona, ​​​​hōʻoluʻolu i ke keiki, a hāʻawi iā ʻoe a me kou ʻohana i ke kākoʻo e pono ai lākou i kēia manawa paʻakikī.

ʻAʻole mālama ʻia kēia e ke kauka hoʻokahi, akā e kahi hui o nā loea mai nā ʻoihana like ʻole. Hiki iā lākou ke hoʻohana i nā mea e like me:

• Nā lāʻau lapaʻau: No ka laʻana, hiki ke hāʻawi ʻia nā lāʻau lapaʻau e kāohi i nā hopu ʻana a i ʻole e hōʻemi i nā mea e like me nā hallucinations a mākou i ʻōlelo ai.
• Hoʻōla kino a me ka hoʻōla hana: Hiki i kēia mau lāʻau lapaʻau ke kōkua i ka hōʻemi ʻana i ka ʻoʻoleʻa o nā ʻiʻo, kōkua i ke keiki e hana i nā mea ma kā lākou iho no ka lōʻihi e like me ka hiki, a kōkua iā lākou e hele.
• ʻŌlelo aʻoaʻo a me ka hoʻōla ʻana i ke olakino noʻonoʻo: Hiki ke paʻakikī loa ka loaʻa ʻana o kahi hōʻailona e like me kēia no ke keiki a me nā mākua. No laila, he mea nui loa ka loaʻa ʻana o ke kākoʻo noʻonoʻo.

E noʻonoʻo, ke ʻike ʻoe e make koke ana kāu keiki mai kēia maʻi, pehea ka nui o ka hopena noʻonoʻo iā ʻoe a me kou ʻohana? No laila, he mea nui ka ʻōlelo aʻoaʻo noʻonoʻo i ka manawa e like me kēia. Eia kekahi, aia nā hui kākoʻo kahi e hiki ai iā ʻoe ke hui pū me nā poʻe ʻē aʻe i loaʻa nā ʻike like. Hiki iā lākou ke hāʻawi iā ʻoe i ka ikaika nui.

I kēia manawa, ke hoʻomau nei nā kānaka noiʻi i ka loaʻa ʻana o nā lāʻau lapaʻau hou no ka maʻi Batten. Ke noiʻi nei lākou i nā lāʻau lapaʻau hou, nā hoʻoili ʻana i nā cell stem, a me ka lāʻau lapaʻau gene, kahi e pani ai i ka gene hemahema me kahi maikaʻi. Hiki i kāu kauka ke kuhikuhi i kāu keiki e komo i kekahi o kēia mau hoʻokolohua lapaʻau.

A hiki i ka loaʻa ʻana o nā lāʻau lapaʻau hou, kau nui nā kauka i ka kaohi ʻana i nā hōʻailona.

Aia kekahi lāʻau lapaʻau i ʻāpono ʻia i kēia manawa?

ʻAe, aia kekahi lāʻau lapaʻau i ʻāpono ʻia e ka US FDA no ka hoʻohana ʻana i nā keiki me ke ʻano CLN2 o ka maʻi Batten. Ua kapa ʻia ʻo Cerliponase alfa (Brineura®). He inikini kēia i hāʻawi pololei ʻia i loko o ke kahe e hoʻopuni ana i ka lolo o kāu keiki i kēlā me kēia ʻelua pule. Hiki i kēia lāʻau lapaʻau ke kōkua i ka hoʻopaneʻe ʻana i ka hiki o ke keiki ke neʻe (e.g., kolo, hele). Eia naʻe, ʻaʻole ia e kāohi i nā hōʻailona ʻē aʻe.

He aha ka wānana o kēia maʻi?

ʻO kaʻoiaʻiʻo, ʻaʻole maikaʻi loa ka nānā ʻana no ka maʻi Batten. E like me kā mākou i ʻōlelo ai, he maʻi make ia. Hoʻonui mālie nā hōʻailona i loko o kekahi mau pule, mahina, a i ʻole nā ​​makahiki. I ka hopena, hiki i ke keiki ke lilo i makapō loa, hiki ʻole ke ʻōlelo, hele wāwae, noho wale, a launa pū me nā poʻe ʻē aʻe. Hiki ke ʻokoʻa ka wikiwiki o ka hoʻonui ʻana o nā hōʻailona mai kekahi keiki a i kekahi.

Maopopo iaʻu ke ʻano hoʻohoka o ke aʻo ʻana i kekahi mea e like me kēia. Akā, a hiki i ka wā e haʻi aku ai ke kino o kāu keiki iā lākou, "Ua luhi wau i kēia manawa," e ʻae iā lākou e hauʻoli i ko lākou wā kamaliʻi e like me ka hiki, e pāʻani, a hana i nā mea a lākou e aloha ai. I loko o kēia manawa, pono kāu keiki i kou aloha a me ke kākoʻo ma mua o ka wā ma mua.

Pono ʻoe e kipa pinepine i nā kauka a hele i nā keʻena lapaʻau e mālama i nā hōʻailona o kāu keiki. No laila, pono ʻoe e hana pū me ka hui lapaʻau. Hiki iā ʻoe ke nīnau iā lākou i kāu mau nīnau i kēia huakaʻi.

Ma waho aʻe o ke kākoʻo ʻana i kāu keiki, pono ʻoe a me ke koena o kou ʻohana i ke kākoʻo nui i kēia manawa. ʻO ka hoʻolālā ʻana no ka nalowale ʻana o kahi keiki a laila e hana me ke kaumaha ma hope he mea paʻakikī loa ia e hana. ʻAʻole ia he mea hiki iā ʻoe ke hana hoʻokahi. No laila, inā makemake ʻoe i ke kōkua i kēia manawa paʻakikī, e ʻike i kahi kākāʻōlelo olakino noʻonoʻo a i ʻole kāu kauka ʻohana (PCP). Makemake paha ʻoe e noʻonoʻo i ke aʻo ʻana, ka hoʻōla ʻohana, a i ʻole ke komo ʻana i kahi hui kākoʻo.

He aha ke kūlana o ke ola o kahi keiki me ka maʻi Batten?

ʻO ka hapa nui o nā keiki me ka maʻi Batten e ola a hiki i ka wā makua. Eia nō naʻe, ʻokoʻa ke ola o ke keiki ma muli o ke ʻano o ka maʻi a me ke koʻikoʻi o ka maʻi. No ka laʻana, ʻo nā keiki e loaʻa ana nā hōʻailona i ka wā kamaliʻi a i ʻole ka wā kamaliʻi e ola pinepine no kahi o ʻelima a ʻeono mau makahiki ma hope o ka hoʻomaka ʻana o nā hōʻailona. Eia nō naʻe, ʻo ke keiki e loaʻa ana nā hōʻailona ma kahi o 10 mau makahiki e ola paha a hiki i ko lākou mau makahiki he 20 mua. I ka ʻōlelo maʻalahi, ʻo ka ʻōpio o ka makahiki e hoʻomaka ai nā hōʻailona, ​​ʻo ka pōkole o ke ola.

He aha ka mea e hana ʻia ma ka maʻi Batten hope loa?

ʻO ke kahua hope loa o ka maʻi Batten kahi kūlana kahi e pono ai ke keiki i ka mālama ʻia i nā hola 24 o ka lā . I kēia manawa, ʻaʻole hiki i ke keiki ke ala aʻe mai kahi moe a neʻe paha. E nalowale loa paha ko lākou ʻike a ʻaʻole hiki ke kamaʻilio pū me ʻoe.

ʻO kēia ke kahua paʻakikī loa o ka maʻi Batten. Hana nā kauka i nā mea āpau e hiki ai iā lākou ke hoʻolilo i ke keiki i ʻoluʻolu a ʻeha ʻole. I loko o kēia kahua hope loa, e pau mālie ka hana a ke kino o ke keiki.

Aia kekahi ala e pale aku ai i kēia maʻi?

ʻO ka mea pōʻino, ʻaʻohe ala e pale aku ai i ka maʻi Batten i kēia manawa. Eia nō naʻe, inā loaʻa i kekahi o kou ʻohana a i ʻole kekahi keiki āu ka maʻi a ke kali nei ʻoe i kahi keiki ʻē aʻe, he manaʻo maikaʻi e kamaʻilio me kāu kauka e pili ana i ke aʻo ʻana i ka genetic. Hiki i kahi hoʻāʻo genetic ke haʻi inā loaʻa iā ʻoe a me kāu hoa ka gene e hoʻoulu ai i ka maʻi. A laila hiki i ke kauka ke kōkua iā ʻoe e hoʻolālā no ka loaʻa ʻana o kahi keiki.

Āhea ʻoe e ʻike ai i ke kauka?

Inā manaʻo ʻoe he mau hōʻailona o ka maʻi Batten kāu keiki, e ʻike koke i ke kauka. Hiki i ka ʻike mua ʻana ke kōkua i ka hoʻomaikaʻi ʻana i ke ʻano o ke ola o kāu keiki i kekahi ʻano.

Eia kekahi, inā loaʻa i kekahi o kou ʻohana kēia maʻi a ke hoʻolālā nei ʻoe e hoʻonui i kou ʻohana (loaʻa ke keiki), e kamaʻilio me ke kauka e pili ana i ke aʻoaʻo genetic.

He aha nā nīnau koʻikoʻi e nīnau aku ai i ke kauka?

Ke hele ʻoe e ʻike i ke kauka, he mea maikaʻi ke nīnau i kēia mau nīnau:

• He aha ke ʻano o ka maʻi Batten i loaʻa i kaʻu keiki?
• He aha ke ʻano o ka lāʻau lapaʻau āu e paipai nei?
• Aia kekahi mau hopena ʻaoʻao i kēlā mau lāʻau lapaʻau?
• He aha nā hōʻailona e pono iaʻu e makaʻala i ka wā e ulu ana kaʻu keiki?
• He aha ka wānana?
• Aia kekahi mau hui kākoʻo hiki iā ʻoe ke paipai mai?

Hiki i nā pākeke ke loaʻa i ka maʻi Batten?

ʻAe, ʻoiai he mea kakaikahi loa, hiki i nā pākeke ke hoʻomohala i nā hōʻailona o ka maʻi Batten. Loaʻa pinepine ia ma kahi o 30 mau makahiki. Inā loaʻa i nā pākeke ka maʻi, ʻaʻole pinepine ka ʻino o nā hōʻailona. Eia kekahi, ʻaʻole e hoʻopōkole kēia mau hōʻailona e ʻike ʻia i ka wā makua.

ʻO ka mea hope loa, ʻo ka mea nui a mākou e hoʻomanaʻo ai, ʻo ia

ʻAʻohe makua e makemake e lohe ua loaʻa i kā lākou keiki kahi maʻi make a e make ma mua o ko lākou hiki ʻana i ka wā makua. He mea maʻamau ka manaʻo nui i ka hoka, ke kaumaha, ka huhū, a me ka hoʻonāukiuki i ka manawa e like me kēia. Hiki iā ʻoe ke manaʻo i kēlā mau manaʻo.

Hiki ke kōkua nui ka hālāwai ʻana me kekahi kākā'ōlelo genetic e aʻo e pili ana i ka Maʻi Batten, nā mea e manaʻo ai, a pehea e hiki ai iā ʻoe a me kou ʻohana ke kōkua i ka hoʻokele ʻana i kēia huakaʻi paʻakikī.

ʻO ka mea nui loa, ʻo ia ka hoʻomanaʻo ʻaʻole ʻoe hoʻokahi. ʻOiai ʻaʻohe lāʻau lapaʻau no ka maʻi Batten, ke hoʻomau nei nā kānaka noiʻi i ka loaʻa ʻana o nā lāʻau lapaʻau hou. Ke noiʻi nei lākou i kekahi mau lāʻau lapaʻau e hiki ke kāohi i nā hōʻailona a hoʻomaikaʻi i ke ʻano o ke ola o ke keiki.

E nīnau i kāu kauka e pili ana i nā hui kākoʻo kahi e hele nei nā mākua ʻē aʻe i kēia. ʻO ka kaʻana like ʻana i kāu mau ʻike a me ke aʻo ʻana mai nā poʻe ʻē aʻe hiki ke lilo i kumu nui o ka ikaika a me ka hōʻoluʻolu i kēia manawa.

ʻO ka maʻi Batten, nā maʻi genetic, nā maʻi ʻōnaehana nerve, nā maʻi pediatric, NCL, nā hōʻailona