He wahi poni nui ko kāu keiki liʻiliʻi ma kona maka? He Sturge-Weber Syndrome paha ia?

E hopohopo iki paha ʻoe inā ʻike ʻoe i kahi kiko nui, pālahalaha, poni a poni ʻeleʻele ma kekahi ʻaoʻao o ka maka o kāu keiki hānau hou, ma ka lae a ma luna paha o nā lihilihi maka. ʻO ka hapa nui o ka manawa, he mau hōʻailona hānau maʻamau kēia. Akā, he mea kākaʻikahi loa, hiki i kahi kiko e like me kēia ke lilo i hōʻailona o kahi maʻi genetic i kapa ʻia ʻo Sturge-Weber Syndrome . E kamaʻilio kākou e pili ana i kēia me nā kikoʻī hou aku i kēia lā, ʻeā? Mai hopohopo, ʻo ka mea nui ka makaʻala i kēia.

He aha ka maʻi Sturge-Weber?

I ka ʻōlelo maʻalahi, ʻo ka Sturge-Weber Syndrome kahi maʻi genetic e hoʻopilikia i ke ʻano o ka ulu ʻana o nā kīʻaha koko i loko o ka lolo, ka ʻili, a me nā maka o kāu pēpē. ʻIke pinepine ʻia ia i ka wā hānau.

ʻO ka hōʻailona mua a maopopo loa o kēia maʻi, ʻo ia ka hōʻailona hānau a mākou i ʻōlelo ai ma mua , ʻo ia hoʻi ka ʻili waina awa . He wahi pālahalaha kēia, ʻulaʻula a poni ʻeleʻele (a ʻoi aku ka ʻeleʻele ma mua o ke kala ʻili maoli o ka pēpē) ma luna o ka ʻili. Loaʻa iā ia kona inoa no ka mea ua like ia me ke kala e waiho ai kahi waina liʻiliʻi ma ka ʻili. ʻIke pinepine ʻia kēia wahi ma kekahi ʻaoʻao o ka maka o ka pēpē, ʻoi aku hoʻi ma ka lae a ma luna o ka lihilihi maka.

Eia nō naʻe, he mea maʻamau loa nā māka hānau. No laila, ʻaʻole nā ​​​​pēpē a pau me kahi ʻili waina awa i loaʻa iā Sturge-Weber Syndrome. Loaʻa paha i kekahi mau keiki kēia wahi wale nō, me ka ʻole o nā hōʻailona ʻē aʻe.

Eia nō naʻe, inā hānau ʻia kāu pēpē me kēia ʻano hōʻailona hānau, e nānā nā kauka i nā kīʻaha koko o ka lolo o ka pēpē i ka wā e hānau ʻia ai e ʻike inā he mau loli ʻē aʻe. ʻO kēia no ka mea hiki i nā pilikia me nā kīʻaha koko i loko o ka lolo ke hoʻopilikia i ke kahe koko i ka lolo, e hana ana i nā mea e like me nā hopu ʻana . ʻAʻole hoʻoweliweli kēia ʻano (Sturge-Weber Syndrome) i ke ola. Eia naʻe, inā ʻaʻole mālama ʻia, hiki iā ia ke hoʻopilikia i ke ʻano o ke ola o ke keiki. No laila he mea nui e makaʻala i kēia a hana i nā hana e pono ai.

He aha nā hōʻailona o ka maʻi Sturge-Weber?

ʻEkolu mau hōʻailona nui o ka Sturge-Weber Syndrome. E nānā kākou i ke ʻano o lākou:

• (ʻAila waina awa) Kaha hānau: ʻO kēia ka hōʻailona nui a mua loa i ʻike ʻia. He hōʻiliʻili kēia o nā kīʻaha koko i hōʻuluʻulu ʻia i loko o ka ʻili o ke keiki. ʻIke pinepine ʻia ma ka lae a ma luna o nā lihilihi maka. I ka hala ʻana o ka manawa, hiki i ka ʻili kahi i loaʻa ai kēia wahi ke mānoanoa a lilo i ʻeleʻele ke kala.

• Glaucoma: He ʻano kēia kahi e hōʻiliʻili ai ka wai i loko o ka maka, e hoʻoulu ai i ke kaomi. Ua like ia me kahi pōpō e hoʻopiha ana i ka wai a ke kumu e ʻūlū ai. Hiki i kēia ke hōʻino i kou ʻike maka, no laila pono ʻoe e makaʻala i kēia. Hiki i kahi helu nui o nā keiki me Sturge-Weber Syndrome ke loaʻa i kēia ʻano.

• Nā angiomas leptomeningeal:He inoa paʻakikī kēia, ʻeā? I ka ʻōlelo maʻalahi, pili ia i nā kīʻaha koko kūpono ʻole (i kapa ʻia ʻo angiomas) e hana ʻia ana i loko o nā membrane e uhi ana i ka lolo a me ke kaula spinal (i kapa ʻia ʻo leptomeninges). Hiki i kēia mau kīʻaha koko kūpono ʻole ke ālai i ke kahe koko i nā ʻāpana o ka lolo. Hiki i nā ʻāpana i hoʻopilikia ʻia o ka lolo ke hana i nā hopu a me ka nāwaliwali ma kekahi ʻaoʻao o ke kino (hemiparesis) .

Inā loaʻa i kāu keiki kahi maʻi hopu, hiki ke hoʻomaka i loko o ko lākou makahiki mua, pinepine ma mua o ko lākou lā hānau ʻelua. ʻO ka maʻamau, hoʻopilikia wale nā ​​​​hōʻailona o ka hopu ʻana i hoʻokahi ʻaoʻao o ke kino. Hiki ke ʻeleʻele ka ʻili waina awa i ka holomua ʻana o ka hopu ʻana. He mea maʻamau kēia, no laila mai hopohopo.

Ma waho aʻe o kēia mau hōʻailona nui, aia kekahi mau hōʻailona ʻē aʻe āu e ʻike ai. He mea nui e hoʻomanaʻo ʻaʻole e ʻike nā kānaka a pau i kēia mau mea a pau.

• Ka lohi o ka ulu ʻana: ʻO ke ʻano kēia ua lohi ke keiki i ka hoʻomohala ʻana i nā mākau kūpono i ka makahiki e like me ke kamaʻilio ʻana, ka hele wāwae ʻana, a me ka pāʻani ʻana me nā keiki ʻē aʻe.
• Hypothyroidism: Hiki i kēia ke hoʻolohi i nā kaʻina hana he nui o ke kino, e hoʻoulu ai i ka luhi a me ka paʻa ʻana.
• Ke kīnā noʻonoʻo: Nā mea e like me nā pilikia aʻo a me ka emi ʻana o ka hiki ke hoʻomaopopo.
• ʻEha poʻo a migraine paha: ʻEha poʻo pinepine.

Akā e hoʻomanaʻo, ʻaʻole i loaʻa kēia mau hōʻailona āpau i kēlā me kēia keiki. Hiki ke ʻokoʻa lākou mai kekahi keiki a i kekahi. Loaʻa paha i kekahi mau keiki ka ʻōhū wale nō, aʻo kekahi poʻe e loaʻa paha ka ʻōhū me ka ʻāʻī.

He aha ke kumu o ka maʻi Sturge-Weber?

ʻO kēia ma muli o kahi ʻano hoʻoilina i loko o kahi gene i kapa ʻia ʻo (CNAQ). ʻO kēia gene ke kuleana no ka kaohi ʻana i ke kūkulu ʻana a me ka hana o nā kīʻaha koko i loko o ko mākou kino. E like me ka hiki ʻole ke hoʻomākaukau pono ʻia kahi meaʻai inā he hewa, pēlā nō hoʻi ka loli ʻana o kēia gene. ʻO ka hopena, ʻaʻole i kūkulu pono ʻia nā kīʻaha koko ʻoiai ke pēpē i loko o ka ʻōpū.

He mea kēia i loaʻa mai nā hanauna mai?

He nīnau kēia a nā mākua he nui. ʻAʻole, ʻaʻole he mea hoʻoilina ka Sturge-Weber Syndrome. He mea ia e hana wale ʻia, ʻo ia hoʻi, me ke kumu ʻole (sporadically). ʻO ke ʻano kēia, hiki i kekahi ke hānau ʻia me kēia maʻi. Mai manaʻo ua hana ʻia ma muli o kekahi mea āu i hana ai a i ʻōlelo ai paha.

Hana ʻia kēia loli genetic i loko o nā cell somatic - ʻo ia hoʻi, ʻaʻole ia e hoʻopilikia i nā cell sex (nā cell hua manu a me ka sperm) o ka makuahine a me ka makuakāne. Hana ʻia kēia loli i ka wā mua loa o ka ulu ʻana o ka embryo. Loaʻa paha i kekahi mau cell kēia loli genetic, aʻo kekahi ʻaʻole paha (ua kapa ʻia kēia he mosaicism). ʻO ia ke kumu e hana pono ai kekahi mau kīʻaha koko, aʻo kekahi ʻaʻole.

He aha nā pilikia e hiki ke loaʻa mai ka Sturge-Weber Syndrome?

Ma muli o nā angiomas leptomeningeal a mākou i kamaʻilio ai, ʻo ia hoʻi nā kīʻaha koko maʻamau ʻole i loko o ka lolo, aia paha ka piʻi ʻana o ka pilikia o kekahi mau pilikia. ʻO kēia mau mea:

• Ka hoʻopili ʻana: ʻO kēia ka hōʻiliʻili ʻana o ka calcium i loko o nā kīʻaha koko . Hiki ke ʻike ʻia kēia ma nā kukuna X o ka lolo.
• Ka nalowale/ka hoʻopau ʻana o nā ʻiʻo o ka lolo (Atrophy): I ka hala ʻana o ka manawa, e emi paha kekahi mau ʻāpana o ka lolo.
• ʻO ka lolo: Ka nalowale ʻana o ka mana ma kekahi ʻaoʻao o ke kino.
• Hahau: He maʻi koʻikoʻi i hana ʻia e ka poloka a i ʻole ka haki ʻana o kahi kīʻaha koko e hoʻolako ana i ke koko i ka lolo.

ʻAʻole loaʻa kēia mau pilikia i nā kānaka a pau, akā he mea nui e ʻike iā lākou.

Pehea e ʻike ai inā loaʻa iā ʻoe ka Sturge-Weber Syndrome?

E hoʻoholo ke kauka inā loaʻa i kāu pēpē ka Sturge-Weber Syndrome ma hope o kona hānau ʻana. Hiki paha iā ʻoe ke ʻike i ka ʻili waina port ma ka ʻili o kāu pēpē. E nānā ke kauka iā ia i ka wā o ka hoʻokolokolo kino mua ʻana o kāu pēpē. A laila, e hana ʻia kahi hoʻokolokolo neurological a me nā hoʻokolohua ʻē aʻe e nānā i nā ʻano ʻē i loko o nā kīʻaha koko e hoʻopilikia ai i nā maka a me ka lolo. Hiki i kēia mau hoʻokolohua ke komo pū me:

• ʻO ke kiʻi MRI (Magnetic Resonance Imaging): Hiki i kēia ke kiʻi i nā kiʻi kikoʻī o ka lolo a me nā kīʻaha koko. He mea nui loa kēia e ʻike ai inā he mau (leptomeningeal angiomas).
• ʻO ke kiʻi CT (Computed Tomography): Lawe pū kēia i nā kiʻi o ka lolo, ʻoi aku hoʻi e ʻike inā he calcification.
• Hoʻāʻo EEG (Electroencephalogram): Ke ana kēia i ka hana uila o ka lolo. Inā loaʻa kahi hopu ʻana, hiki iā ia ke kōkua i ka hoʻoholo ʻana i ke kumu o ia mea a ma hea i loko o ka lolo e hoʻomaka ai.
• Hoʻokolokolo maka: He mea nui kēia e nānā i ka glaucoma a me ke kaomi maka.

Ma muli o ka ʻike i loaʻa mai kēia mau hoʻokolohua hiki i nā kauka ke hana i kahi hōʻoia pololei.

He aha nā lāʻau lapaʻau no ka Sturge-Weber Syndrome?

ʻO ke kumu nui o ka mālama ʻana no kēia maʻi ka kaohi ʻana i nā hōʻailona. ʻO ia hoʻi, ʻaʻohe lāʻau lapaʻau i kēia manawa, akā he nui nā lāʻau lapaʻau e hiki ke kōkua i ka kaohi ʻana i nā hōʻailona a kōkua i ke keiki e ola i kahi ola maikaʻi aʻe. Hiki i kēia mau mea ke komo pū me:

• Hoʻohana ʻia nā lāʻau lapaʻau antiseizure a i ʻole kekahi manawa ʻoki kino e kāohi i nā hopu ʻana. Hiki i nā keiki he nui ke kāohi i ko lākou mau hopu ʻana me nā lāʻau lapaʻau.
• Kōkua nā kulu maka lāʻau lapaʻau a i ʻole ke ʻoki kino no ka glaucoma i ka hoʻēmi ʻana i ke kaomi o nā maka.
• Hiki i ka hoʻoponopono hou ʻana i ka ʻili laser ke hōʻemi i ke ʻano o kahi ʻili waina awa. ʻOiai ʻaʻole kēia e wehe loa i ka ʻili, hiki iā ia ke hōʻemi i kona kala a hoʻololi i kona ʻano i kekahi ʻano.
• Hoʻōla kino no ka nāwaliwali o nā ʻiʻo. Inā he nāwaliwali ma kekahi ʻaoʻao o ke kino, hiki i kēia ke kōkua i ka hoʻoikaika ʻana i kēlā mau ʻiʻo a maʻalahi ka neʻe ʻana.
• Loaʻa nā papa hoʻonaʻauao kūikawā no nā keiki me nā lohi o ka ulu ʻana a i ʻole ke kīnā noʻonoʻo. He mea nui loa kēia no ka hoʻomohala ʻana i ko lākou mau hiki.

Hiki i nā kauka ke ʻōlelo aku i nā pākeke me Sturge-Weber Syndrome e lawe i ka aspirin haʻahaʻa i kēlā me kēia lā e hōʻemi i ka pilikia o ka hahau ʻana a me nā hōʻailona pili. Eia naʻe, mai hāʻawi i ka aspirin i nā keiki ʻōpio me ka ʻole o ke aʻo ʻana a ke kauka. Hiki ke lilo i mea weliweli.

ʻOkoʻa ke ʻano o ka lāʻau lapaʻau mai kēlā kanaka a kēia kanaka. E haʻi aku ke kauka o kāu keiki iā ʻoe i nā lāʻau lapaʻau a lākou e ʻōlelo ai a me nā hopena ʻaoʻao o kēlā mau lāʻau lapaʻau, i hiki iā ʻoe ke hoʻoholo i nā hoʻoholo e pili ana i ke olakino o kāu keiki.

Pehea lā ka wā e hiki mai ana no ke keiki me ka Sturge-Weber Syndrome?

Hiki i ke kauka o kāu keiki ke haʻi maikaʻi loa iā ʻoe e pili ana i ko lākou kūlana. I ke ʻano o Sturge-Weber Syndrome, hiki i ka nui o ka hōʻino ʻana o ka lolo ke kōkua i kāu kauka e hoʻoholo i ka prognosis o kāu keiki. No ka laʻana, inā hoʻomaka kāu keiki e loaʻa i nā maʻi ma mua o 2 mau makahiki, ʻoi aku ka nui o ka loaʻa ʻana o nā lohi o ka ulu ʻana a i ʻole nā ​​​​kīnā noʻonoʻo. Eia naʻe, ʻaʻole kēia ka hihia no nā keiki āpau.

Pono kāu keiki e noho pili pono me kā lākou hui lapaʻau i ko lākou ola a pau e mālama i nā hōʻailona. Hiki iā lākou ke ʻike i kahi neurologist inā kūpono, a me kahi ophthalmologist no nā nānā maka makahiki.

Aia kekahi hopena i ke ola o ke ola?

He mea hopohopo kēia no nā mākua he nui. ʻAʻole pinepine ka Sturge-Weber Syndrome i ka hoʻopilikia ʻana i ke ola o ke keiki. Eia nō naʻe, hiki i nā hōʻailona ke hoʻopilikia i ke ʻano o ke ola o ke keiki, no laila e pono ai ka mālama ʻana a me ka mālama ʻana mai ke kauka i ko lākou ola a pau. ʻOiai ʻokoʻa ke koʻikoʻi o kēia ʻano mai kēlā kanaka a kēia kanaka, e wehewehe ke kauka o kāu keiki i ka mea e manaʻo ai a me ka mea e makaʻala ai.

Hiki ke pale ʻia ka maʻi Sturge-Weber?

E like me kā mākou i ʻōlelo ai ma mua, ʻo ka hoʻololi ʻana o ka gene e hoʻoulu ai i ka Sturge-Weber Syndrome e kū koke mai ana, me ke kumu ʻole. No laila, ʻaʻohe ala i hōʻoia ʻia e pale aku ai. ʻAʻole kēia he mea e hana ʻia ma muli o ka hewa o kekahi.

Hiki ke ola i kahi ola maʻamau me ka Sturge-Weber Syndrome?

ʻAe, hiki loa ke ola i kahi ola maʻamau me kahi maʻi e like me Sturge-Weber Syndrome. He nui ka poʻe e ola nei i nā ola holomua a hauʻoli me kēia maʻi.

He mea maʻamau loa nā māka hānau. Eia nō naʻe, ʻaʻole maʻamau loa nā māka hānau i ʻike ʻia a laha ma ka maka. Makemake paha ʻoe e noʻonoʻo i ka mālama ʻana i ka laser e hōʻemi i ke ʻano o kēia mau māka hānau e ʻoluʻolu ai. ʻO kāu hoʻoholo wale nō ia.

ʻAʻohe hewa o ke ʻano o kou hānau ʻia ʻana. He ʻano kūikawā ko kēlā me kēia kanaka. Hana ʻia ka ʻoki kino hoʻonani e hana i nā hoʻololi pilikino i ko lākou helehelena. He mea maopopo ia. Inā ʻoe e koho e hana i ke ʻoki kino hoʻonani a i ʻole, he hoʻoholo pilikino ia. ʻAʻole pono e hoʻohuli ka manaʻo o kekahi poʻe iā ʻoe i kēlā hoʻoholo.

Pehea e hiki ai iaʻu ke kōkua i kaʻu keiki me ka Sturge-Weber Syndrome?

ʻO ka mea nui loa āu e hiki ai ke hana ma ke ʻano he makua, ʻo ia ke aloha, kākoʻo, a hāʻawi i kāu keiki i ka mālama olakino a lākou e pono ai. ʻO ka mea nui loa e hana ai e kū pono ai i kēia kūlana, ʻo ia ke kūkulu ʻana i kahi kiʻi ponoʻī maikaʻi.

Hiki iā ʻoe ke kōkua i kāu keiki e ʻoluʻolu i ko lākou helehelena ma ke kamaʻilio ʻana e pili ana i ko lākou kiʻekiʻe, ke ʻano o ko lākou ihu, a me kēlā ʻano waina awa ma ke ʻano he ʻāpana maʻamau o ko lākou helehelena. E kamaʻilio me kāu keiki e pili ana i nā mea e like me, "Aia kekahi mau mea e pili ana i ko mākou kino i hiki ʻole iā mākou ke kaohi. Akā hiki iā mākou ke aʻo e aloha i nā mea a mākou ma ka noʻonoʻo ʻana iā lākou he 'kākou'."

Inā pono ʻoe a i ʻole kāu keiki i ke kākoʻo noʻonoʻo, e kamaʻilio me kāu kauka. Hiki iā ia ke ʻōlelo aku iā ʻoe e ʻike i kahi kākāʻōlelo olakino noʻonoʻo a i ʻole e hui pū me kahi hui kākoʻo me nā ʻohana ʻē aʻe me Sturge-Weber Syndrome. Nui nā mea e aʻo ai mai nā ʻike o haʻi.

Āhea wau e lawe ai i kaʻu keiki i ke kauka?

Inā ʻaʻole kāu keiki e hoʻokō i nā pae hoʻomohala kūpono no kona mau makahiki, e like me ka ʻōlelo ʻana i kāna mau ʻōlelo mua a i ʻole ka hele wāwae ʻana, e haʻi i kāu kauka.

ʻO kekahi o nā hōʻailona o ka Sturge-Weber Syndrome, e like me ka nāwaliwali o nā ʻiʻo ma kekahi ʻaoʻao o ke kino, hiki ke like me nā hōʻailona o ka hahau ʻana. Inā ʻike ʻoe i kekahi mau hōʻailona hou a ʻano ʻē paha i ʻokoʻa mai ke ʻano maʻamau o kāu keiki, mai kānalua e kāhea i kāu kauka a kāhea paha i nā lawelawe ulia pōpilikia.

Inā loaʻa i kāu keiki kahi ʻōʻō no ka manawa mua, e lawe koke iā ia i ka haukapila. He mea nui loa kēia.

He aha nā nīnau e pono iaʻu e nīnau aku i ke kauka o kaʻu keiki?

Ke kipa aku ʻoe i ke kauka o kāu keiki, e nīnau i nā nīnau a pau āu e loaʻa ai. Mai hūnā i kekahi mea. Eia kekahi laʻana, he manaʻo maikaʻi ke nīnau i nā nīnau e like me:

• "He aha nā hōʻailona e pono iaʻu e makaʻala?"
• "He aha ke ʻano o ka lāʻau lapaʻau āu e paipai nei?"
• "Aia kekahi mau hopena ʻaoʻao o ka lāʻau lapaʻau? He aha ia mau mea?"
• "He aha kaʻu e hana ai inā loaʻa i kaʻu keiki kahi maʻi ʻeha?"
• "He aha nā mea e pono ai kākou e hoʻomākaukau no ka wā e hiki mai ana?"

ʻO ka Sturge-Weber Syndrome kahi maʻi i hiki ke paʻakikī iki inā ʻike ʻoe i nā manawa mua me kāu keiki hānau hou. Hiki paha iā ʻoe ke hopohopo e pili ana i ka mea e hiki mai ana a pehea lākou e kū ai i nā hōʻailona i manaʻo ʻole ʻia e ʻike koke ʻia. He mea maʻamau ka loaʻa ʻana o nā nīnau a me ka manaʻo nalowale iki i kēia manawa. Akā e ʻike ʻaʻole ʻoe hoʻokahi. Ua mākaukau ka hui lapaʻau o kāu keiki e kōkua iā ʻoe e hoʻomaopopo i ka mea e hana nei a pane i nā nīnau āu e loaʻa ai. E kākoʻo lākou iā ʻoe a me kāu keiki i ko lākou ulu ʻana. Inā ʻike ʻoe i kekahi mau hōʻailona hou a i ʻole he mau nīnau e pili ana i ka mālama ʻana o kāu keiki, mai kānalua e kamaʻilio me kā lākou kauka.

ʻO nā mea nui a mākou e makemake ai e lawe i ka home mai kēia ʻatikala

ʻAe, ua kamaʻilio nui kākou e pili ana i ka Sturge-Weber Syndrome i kēia lā, ʻeā? Eia kekahi o nā mea nui e hoʻomanaʻo ai:

• ʻAila waina awa: ʻO ka hōʻailona nui o kēia he wahi poni a ʻeleʻele paha ma ka maka o ke pēpē, ʻoi aku hoʻi ma ka lae a ma luna o nā lihilihi. Eia naʻe, ʻaʻole nā ​​​​kānaka a pau i loaʻa kēia wahi i loaʻa iā Sturge-Weber Syndrome.
• He maʻi hoʻoilina kēia: akā, ʻaʻole ia he mea i hoʻoilina ʻia, he mea ia e hiki wale mai ana ma ka ulia pōpilikia.
• Nā Hōʻailona: Ma waho aʻe o ka macula, ʻo nā hōʻailona ʻē aʻe e komo pū me ka hoʻonui ʻia o ke kaomi maka (glaucoma), nā hopu ʻana ma muli o nā pilikia me nā kīʻaha koko i loko o ka lolo, a me nā lohi o ka ulu ʻana. ʻAʻole e ʻike nā kānaka a pau i nā hōʻailona āpau.
• Aia nā lāʻau lapaʻau: ʻO ke kumu nui o ka lāʻau lapaʻau ʻana ka kaohi ʻana i nā hōʻailona. Aia nā mea e like me nā lasers, nā lāʻau lapaʻau, ke ʻoki kino, a me ka hoʻōla kino.
• E kākoʻo i kāu keiki: He mea nui loa ke kōkua i kāu keiki e hoʻomohala i kahi manaʻo maikaʻi e pili ana i ko lākou helehelena. E ʻimi i ke kōkua o nā kauka a, inā pono, nā kākāʻōlelo noʻonoʻo.
• Mai hopohopo, e ʻike: He mea maʻamau ka hopohopo ke lohe ʻoe e pili ana i kahi maʻi e like me kēia. Akā ʻo ka mea nui loa, ʻo ia ka loaʻa ʻana o ka ʻōlelo aʻoaʻo lapaʻau kūpono a me ka ʻike e pili ana i kēia. E kamaʻilio me kāu kauka e pili ana i nā mea āpau.

Makemake mākou iā ʻoe a me kāu keiki e hauʻoli a olakino mau!

ʻO ka maʻi Sturge-Weber, ka ʻili waina Port, ka maʻi hānau, ka glaucoma, ke olakino maikaʻi, nā maʻi genetic, ke olakino o ke keiki