Loaʻa i kāu keiki kēia mau hōʻailona? E kamaʻilio kākou e pili ana i ka Ataxia-Telangiectasia (AT)!

Ke kuʻia pinepine nei kāu keiki liʻiliʻi ma mua o nā keiki ʻē aʻe i ka wā e hele ana, a i ʻole he mea paʻakikī iā ia ke mālama i kona kaulike? I kekahi manawa he mau ʻupena nananana ʻulaʻula liʻiliʻi kona ma nā keʻokeʻo o kona mau maka a i ʻole ma kona mau papālina? He mau mea liʻiliʻi kēia a mākou e hoʻowahāwahā ai i kekahi manawa, akā hiki ke lilo i mau hōʻailona mua o kahi maʻi genetic laha ʻole i kapa ʻia ʻo `Ataxia-Telangiectasia (AT). No laila, ʻoiai he kumuhana paʻakikī kēia, e kamaʻilio kākou e pili ana i ia mea ma ke ʻano maʻalahi hiki iā ʻoe ke hoʻomaopopo.

He aha maoli ka 'Ataxia-Telangiectasia (AT)'?

I ka ʻōlelo maʻalahi, ʻo 'Ataxia-Telangiectasia (AT),' i ʻike ʻia hoʻi e kekahi poʻe ʻo 'Louis-Bar Syndrome,' he maʻi genetic kakaikahi loa ia e hoʻopilikia nui ana i kā mākou ʻōnaehana nerve, ka pūnaewele o nā aʻalolo e lawe ana i nā leka mai ka lolo, ke kaula spinal, a ma ke kino holoʻokoʻa, a me ka ʻōnaehana pale, ka mea e pale ai i ko mākou kino mai nā maʻi.

He kūlana `(neurodegenerative)` kēia. ʻO ia hoʻi, i ka hala ʻana o ka manawa, nāwaliwali mālie nā pūnaewele i loko o ko kākou ʻōnaehana nerve, a emi iho kā lākou hana. E noʻonoʻo e like me kahi mīkini i hana maikaʻi ma mua e lilo mālie i ʻelemakule, a pau nā ʻāpana a pau ka hana. Ke nāwaliwali kēia mau pūnaewele nerve, loaʻa kahi kūlana i kapa ʻia ʻo `(ataxia)`, kahi e nalowale ai ke kaulike o ke kino i ka wā ʻōpiopio a lilo nā neʻe ʻana i mea ʻē. ʻO ia ke kumu i kapa ʻia ai ʻo "ataxia" pēlā.

ʻO kekahi hōʻailona nui ʻē aʻe, ʻo ia ka telangiectasia. ʻO ia ka wā e ʻike ʻia ai nā kīʻaha koko ʻulaʻula liʻiliʻi e like me ke kaula ma nā keʻokeʻo o nā maka, a i kekahi manawa ma nā papālina a me nā pepeiao. ʻAʻohe ʻeha o kēia mau mea, akā he hōʻailona ia o ka maʻi.

ʻO wai ka mea hiki ke hoʻomohala i kēia maʻi?

ʻO ke kumu o ka 'Ataxia-Telangiectasia (AT)' he loli i loko o nā genes, ʻo ia hoʻi, he 'mutation gene' . Hiki i kekahi ke hoʻoilina i kēia. Akā pehea ʻoe e ʻike ai? Hiki mai kēia maʻi inā loaʻa i ke keiki kahi kope mutated o kēia gene 'ATM' mai ka makuahine a me ka makuakāne. I ka lāʻau lapaʻau, kapa mākou i kēia hoʻoilina '(autosomal recessive)'.

E noʻonoʻo he hoʻokahi wale nō kope o kēia gene i hoʻololi ʻia nā mākua ʻelua. A laila, ʻaʻole lākou e hōʻike i nā hōʻailona, ​​no ka mea, ʻelua kope o ka gene i hoʻololi ʻia e pono ai ke ulu ʻana o ka maʻi. Akā, e lilo lākou i "mea lawe" o kēia gene. No laila, ʻo ke keiki mai nā mākua ʻelua he mau mea lawe i ka hiki ke loaʻa i nā kope ʻelua o kēia gene i hoʻololi ʻia. Inā hana ʻia kēlā, e loaʻa i ke keiki ke kūlana `AT`. Wahi a nā helu helu ma ʻAmelika Hui Pū ʻIa, ma kahi o 1% o ka heluna kanaka ma ia ʻāina he mau mea lawe i kēia kope i hoʻololi ʻia o ka gene `ATM`.

Pehea ka maʻamau o ka 'Ataxia-Telangiectasia (AT)'?

He maʻi laha ʻole kēia. Ma ka honua holoʻokoʻa, ua manaʻo ʻia aia ma kahi o hoʻokahi i loko o 40,000 a 100,000 mau kānaka i loaʻa i kēia maʻi. ʻO ia hoʻi, he mea laha ʻole loa ia ma Sri Lanka.

Pehea ka hopena o kēia maʻi i ke kino o ke keiki?

ʻO ka Ataxia-Telangiectasia (AT) kahi maʻi e hoʻonui mālie i ka hala ʻana o ka manawa.ʻO ia hoʻi, hoʻonui ʻia nā hōʻailona i ka hala ʻana o ka manawa. ʻO ka maʻamau, hoʻomaka kahi keiki me ka `AT` e hōʻike i nā hōʻailona ma kahi o 5 mau makahiki.

ʻO nā hōʻailona mua e ʻike ʻia, he mau pilikia me ka neʻe ʻana.

• I koʻu hele ʻana , manaʻo wau e hihia ana koʻu mau wāwae a nalowale koʻu kaulike .
• Ke ʻoniʻoni nei nā lālā i ke ʻano kūlohelohe ʻole.
• ʻŌwili wale nā ​​ʻiʻo.
• Ke ʻōlelo au , ua huikau kaʻu mau ʻōlelo, a me he mea lā he paʻakikī iaʻu ke ʻōlelo .

I ka wā e ulu aʻe ai kāu keiki a komo i ka wā ʻōpio, pono paha lākou i kahi mea kōkua neʻe, e like me ka noho huila, e hele ai. Maopopo iaʻu he paʻakikī kēia no nā mākua e lawelawe, akā he mea nui e makaʻala i kēia kūlana.

He aha nā hōʻailona o 'Ataxia-Telangiectasia (AT)'?

E like me kā mākou i kūkākūkā ai ma mua, ʻelua mau hōʻailona nui o kēia maʻi:

1. Paʻakikī i ka hoʻonohonoho ʻana i nā neʻe (ataxia) : Paʻakikī i ka hele wāwae, nalowale ke kaulike, a pēlā aku.

2. Nā kīʻaha koko ʻulaʻula liʻiliʻi e ʻike ʻia ma nā maka a me ka ʻili (telangiectasia) : ʻIke pinepine ʻia kēia mau mea ma nā keʻokeʻo o nā maka, nā papālina, a me nā pepeiao.

Ma waho aʻe o kēia, hiki ke ʻike ʻia kekahi mau hōʻailona pili i ka neʻe ʻana ma ke kūlana `AT`:

• Ka paʻakikī o ka hele wāwae (ʻo ia kekahi o nā hōʻailona nui i ʻike mua ʻia).
• ʻAʻole hiki ke hoʻoneʻe i nā maka mai kēlā ʻaoʻao a i kēia ʻaoʻao "oculomotor apraxia" a i ʻole nā ​​​​neʻe maka ʻē aʻe "nystagmus".
• Nā neʻe ʻana me ka makemake ʻole, ka wikiwiki (chorea).
• ʻŪmiʻi ʻana o nā ʻiʻo (myoclonus).
• Ka nalowale mālie o ka hana a ke aʻalolo (neuropathy).
• ʻŌlelo pahee : He nui nā keiki e paʻakikī i ka haʻi pololei ʻana i nā huaʻōlelo a me ka hoʻohana ʻana i ke koʻikoʻi kūpono i kā lākou ʻōlelo. ʻO ka hopena, ʻaʻole like kā lākou ʻōlelo me ka ʻōlelo "maʻamau".
• Nā pilikia kaulike .
• Ka lohi o ka ulu ʻana a i ʻole ka hana pono ʻole o ka ʻōnaehana endocrine: Hiki ke hoʻonui ʻia kēia kūlana e nā maʻi pinepine a me nā loli i nā hormones ulu.

ʻO Ataxia-Telangiectasia (AT) kahi maʻi e hoʻonāwaliwali ai i ka ʻōnaehana pale o ke kanaka . Hoʻonui kēia nāwaliwali i ka hala ʻana o ka manawa. ʻO nā hōʻailona o kahi ʻōnaehana pale nāwaliwali:

• Ka loaʻa pinepine ʻana o nā maʻi maʻi māmā mau loa.
• Manaʻo luhi mau.
• Ka maʻi koke ʻana ma mua o nā poʻe ʻē aʻe.
• Nā maʻi pinepine a me ka lohi o ka ho'ōla ʻana o nā ʻeha.
• ʻO ka hoʻonui ʻia o ka pilikia o ka loaʻa ʻana o nā maʻi kanesa e like me ka `Leukemia` (ka maʻi kanesa koko) a i ʻole ka `Lymphoma` (ka maʻi kanesa o nā lymph nodes).
• ʻO ka hypersensitivity i ka radiation (e.g. X-rays).

ʻO kekahi hōʻailona ʻē aʻe, ʻo ia ka piʻi ʻana o ka pae o kahi protein i kapa ʻia ʻo `alpha-fetoprotein (AFP)` i loko o ke koko. ʻAʻole ʻike ʻia ke kumu pololei o kēia piʻi ʻana o nā pae `AFP`.

He aha ke kumu o ka 'Ataxia-Telangiectasia (AT)'?

Hoʻokumu ʻia kēia maʻi e kahi mutation i loko o ka gene i kapa ʻia ʻo "ATM".

I kēia manawa, e nānā kākou i ke ʻano maʻalahi o kēia mau genes a me nā chromosomes. E noʻonoʻo he puke nui kahi i loaʻa nā kuhikuhi a pau no ko kākou kino e ulu ai. ʻO 'DNA' ka inoa o kēlā puke. Ua kapa ʻia nā mokuna o kēia puke 'DNA' he 'genes'. Ua mālama ʻia kēia 'DNA' i loko o nā mea i kapa ʻia ʻo 'chromosomes'. ʻO ka maʻamau, he 46 chromosomes ko ke kanaka, i hoʻonohonoho ʻia i 23 mau pālua. Loaʻa iā kākou kekahi mai ko kākou makuahine a ʻo kekahi mai ko kākou makuakāne e hana i kēia mau pālua chromosome.

Ke hoʻokumu ʻia nā pūnaewele i loko o nā ʻōkana hānau, māhele kēia mau pūnaewele a hana i nā kope o lākou iho. I kekahi manawa, e like me ka mīkini paʻi e hoʻopaʻa ana i kahi ʻāpana pepa, hiki i kēia mau pūnaewele ke hana i nā hewa i loko o kā lākou mau genes, i kapa ʻia he mutations. Hana ʻia kekahi mau kope o nā kuhikuhi e like me kā lākou ʻano, a hana hewa kekahi.

E like me kā mākou i ʻōlelo ai ma mua, ua hoʻoilina ʻia kēia gene i hoʻololi ʻia ma ke ʻano "autosomal recessive". ʻO ke ʻano kēia, ʻo ka makuahine a me ka makuakāne nā mea lawe o kēia gene "ATM" i hoʻololi ʻia, a e loaʻa i ke keiki ka maʻi inā hoʻoilina lāua ʻelua i ka gene i hoʻololi ʻia. Inā hele mai ia mai hoʻokahi makua wale nō, e lilo wale ke keiki i mea lawe a ʻaʻole e hōʻike i nā hōʻailona.

He mea nui loa kēia gene `ATM`. No ka mea, hana ia i nā protein e haʻi i ke kino pehea e hoʻoponopono ai i kā mākou `DNA` ke hōʻino ʻia. Ua like nā protein `ATM` me nā mākaʻi. ʻO lākou ka poʻe e ʻimi i nā cell i hōʻino ʻia a me nā ʻāpana `DNA` a lawe mai i nā `(enzymes)` e pono ai e hoʻoponopono iā lākou. Ma muli o kēia kaʻina hana hoʻoponopono `DNA` i huli mālie ai nā ʻaoʻao o ka puke kuhikuhi o ko mākou kino.

Eia kekahi, ke haʻi aku nei ka protein `ATM` i kā mākou ʻōnaehana nerve a me ka ʻōnaehana pale, "Pono ʻoe e hana pono." No laila, i ka wā e loaʻa ai kahi mutation i loko o ka gene `ATM`, e emi ana ka hana o ka protein `ATM` i ka hala ʻana o ka manawa. ʻO ia hoʻi, ua nalowale nā ​​​​​​ʻāpana o kā lākou puke kuhikuhi i nā cell, a ʻaʻole hiki iā lākou ke hana pono. ʻO ia ke kumu nui o nā hōʻailona o `Ataxia-Telangiectasia (AT)`. Ua maopopo iā ʻoe?

Pehea e ʻike ʻia ai ka maʻi ʻo 'Ataxia-Telangiectasia (AT)'?

E hoʻomaka ke kauka ma ka nānā ʻana i kāu mau hōʻailona a me ka hana ʻana i nā hoʻokolohua kiʻi a me nā hoʻokolohua koko e hoʻoholo ai i ka hoʻololi genetic e hoʻokumu nei i kāu mau hōʻailona. E nānā pono ana kāu kauka i ke olakino o kāu keiki a me ka mōʻaukala olakino ʻohana e hana i kahi hōʻailona. Inā kānalua ʻoe he AT kāu, he mea nui e ʻike i kahi immunologist no ka loiloi piha.

He aha nā hoʻokolohua e hoʻohana ʻia e ʻike ai i ka 'Ataxia-Telangiectasia (AT)'?

Aia kekahi mau hoʻokolohua e hiki ke kōkua i ka ʻike ʻana i kēia maʻi:

• Ka hoʻāʻo ʻana i ka genetics : He hoʻāʻo koko kēia e hiki ke kuhikuhi i ka mutation genetic kikoʻī e hoʻoulu ai i kāu mau hōʻailona.
• ʻO ke Kiʻi Resonance Magnetic (MRI) : Lawe kahi scan MRI i nā kiʻi o ka lolo a nānā i nā hōʻailona o nā hunaola nerve a i ʻole nā ​​hunaola cerebellum e nāwaliwali ana (cerebellar atrophy). He hōʻailona kēia e ʻoi aku ka ʻino o ka ataxia.
• Karyotyping : He hoʻāʻo koko nō hoʻi kēia. Nānā ia i nā chromosomes e ʻike i nā kūlana genetic.
• Nā hoʻāʻo koko : Hana ʻia nā hoʻāʻo koko e nānā i nā pae alpha-fetoprotein (AFP) kiʻekiʻe.

Ma nā ʻāina he nui, hoʻohana ʻia nā nānā ʻana o nā keiki hānau hou e ʻike i ke ʻano o Ataxia-Telangiectasia (AT). A i ʻole, ʻike pinepine nā kauka i ke ʻano i ka wā kamaliʻi.

He aha nā lāʻau lapaʻau no ka 'Ataxia-Telangiectasia (AT)'?

ʻO ka lāʻau no ka 'Ataxia-Telangiectasia (AT)' ʻo ia wale nō ke kāohi i nā hōʻailona . ʻAʻohe lāʻau lapaʻau no kēia maʻi i kēia manawa . Hoʻopilikino ʻia nā koho lapaʻau, ʻo ia hoʻi, ʻokoʻa paha lākou mai kekahi keiki a i kekahi keiki. Hiki iā lākou ke komo pū me:

• No ke kāohi ʻana i ka telangiectasia, ʻo ia hoʻi kahi pūnaewele o nā kīʻaha koko e kū mai ana ma ka ʻili , e pale i ka nui o ka lā .
• Inā ulu ka maʻi kanesa , hoʻohana ʻia ka chemotherapy .
• Hoʻoikaika kino e hoʻoikaika i nā ʻiʻo.
• Ke loaʻa ʻana o nā inikini gammaglobulin no nā maʻi hanu.
• ʻO ka loaʻa ʻana o ka immunoglobulin therapy e kākoʻo i kahi ʻōnaehana pale nawaliwali.
• Ke lawe nei i nā antibiotics e mālama i nā maʻi.
• ʻO ka lawe ʻana i nā lāʻau lapaʻau e like me Diazepam e kāohi i nā pilikia ʻōlelo a me nā neʻe ʻana o nā ʻiʻo me ka makemake ʻole.

Hiki iaʻu ke hōʻemi i ka pilikia o ka loaʻa ʻana o ka `Ataxia-Telangiectasia (AT)` i kaʻu keiki?

No ka mea, ʻo ka 'Ataxia-Telangiectasia (AT)' ka hopena o kahi hoʻololi genetic, ʻaʻohe ala e pale aku ai iā ia mai ka hanana ʻana . Eia nō naʻe, ma ke ʻano laulā, aia nā mea hiki iā ʻoe ke hana e hōʻemi i kou pilikia o ka loaʻa ʻana o kahi keiki me kahi maʻi genetic, e like me ka pale ʻana i ka puhipaka a me ka pale ʻana i ka ʻike ʻana i nā kemika. Inā ʻoe e hoʻolālā ana e hāpai, he manaʻo maikaʻi e kamaʻilio me kāu kauka e pili ana i ka ʻōlelo aʻoaʻo genetic e hoʻomaopopo i kou pilikia o ka loaʻa ʻana o kahi keiki me kahi maʻi genetic e like me 'Ataxia-Telangiectasia (AT)'.

He aha kaʻu e manaʻo ai inā loaʻa iaʻu kahi keiki me ka `AT`?

ʻO Ataxia-Telangiectasia (AT) kahi maʻi e lilo i mea ʻino i ka hala ʻana o ka manawa. Hoʻomaka nā hōʻailona liʻiliʻi e hoʻopilikia i ka neʻe ʻana o kāu keiki i ka wā kamaliʻi, me nā pūnaewele aʻa koko i ʻike ʻia i loko o ka ʻili. I ka wā e ʻelemakule ai ke keiki, nalowale ko lākou mau cell i ko lākou hiki ke hana e like me ka manual kuhikuhi. ʻO ke ʻano kēia e lilo nā hōʻailona o ke keiki i mea ʻino loa, a pono pinepine lākou e hoʻohana i ka noho huila i ka wā e hiki ai lākou i ka wā makua.

ʻO kahi hōʻailona o kēia maʻi, ʻo ia ka nāwaliwali o ka ʻōnaehana pale kino, no laila hiki i kahi maʻi liʻiliʻi ke loaʻa ka hopena koʻikoʻi i ke olakino o ke keiki.

Hoʻonui pū ka ʻōnaehana pale maʻi nāwaliwali i ka pilikia o ka loaʻa ʻana o nā maʻi kanesa e like me ka leukemia a i ʻole ka lymphoma. Eia nō naʻe, aia nā lāʻau lapaʻau e hoʻomaikaʻi i ka hana o ka ʻōnaehana pale, hiki ke kōkua i ka mālama ʻana i ke olakino o kāu keiki.

ʻOkoʻa ke ola o ka AT ma muli o ke koʻikoʻi o nā hōʻailona. Eia nō naʻe, ola ka hapa nui o ka poʻe me ka maʻi a hiki i ka wā ʻōpio (ma kahi o 30 mau makahiki, ʻo ka awelika he 25 mau makahiki). ʻO ka mālama mua ʻana i nā maʻi maʻamau a me nā nānā pale no ka maʻi ʻaʻai hiki ke kōkua i ka hoʻolōʻihi ʻana i ke ola.

Aia kekahi lāʻau lapaʻau no ka 'Ataxia-Telangiectasia (AT)'?

ʻAʻole, ʻaʻohe lāʻau lapaʻau no ka `Ataxia-Telangiectasia (AT)` i kēia manawa . ʻO ka pahuhopu o nā lāʻau lapaʻau e hōʻoluʻolu i nā hōʻailona, ​​e maʻalahi ke ola no kēlā me kēia kanaka me ka maʻi, a kōkua i ka hoʻolōʻihi ʻana i ke ola.

Pehea e mālama ai i kaʻu keiki me ka `AT`?

Ke ʻike ʻoe ua loaʻa i kāu keiki ka `Ataxia-Telangiectasia (AT),` hiki ke paʻakikī ke hoʻomaopopo i ke ʻano piha o ke kūlana a ʻike pono pehea e kōkua ai i kāu keiki. E hāʻawi ke kauka o kāu keiki i kahi hoʻolālā lapaʻau i kūpono i kāna mau hōʻailona, ​​a e mākaukau ʻo ia e pane i nā nīnau āu e loaʻa ai.

Hiki i kāu kauka ke kuhikuhi aku iā ʻoe e hālāwai me kahi kākāʻōlelo genetic . He poʻe loea nā kākāʻōlelo genetic i ka genetics. Hiki iā lākou ke kōkua i kou ʻohana e aʻo hou e pili ana i ka Ataxia-Telangiectasia (AT) a kōkua i kāu keiki e ola i kahi ola ʻoluʻolu a hoʻokō. Hiki iā lākou ke kōkua iā ʻoe e hoʻomanawanui i ke kaumaha āu e kū nei i ka wā e loaʻa ai i kāu keiki kahi hōʻailona.

Āhea wau e ʻike ai i ke kauka?

Ma muli o ka hoʻopilikia ʻana o Ataxia-Telangiectasia (AT) i ka ʻōnaehana pale, inā hōʻike kāu keiki i nā hōʻailona o kahi maʻi , pono ʻoe e ʻike koke i ke kauka no ka mālama ʻana. Hiki i nā hōʻailona o kahi maʻi ke komo pū me:

• Ka loli ʻana o ka ʻili ma kahi i loaʻa i ka maʻi.
• Nā anu.
• Kuke.
• Kuni.
• Ka manaʻo o ka ʻeha a i ʻole ka ʻeha ma kekahi ʻāpana o ke kino a i ʻole ke kino holoʻokoʻa.
• Ka pehu ʻana ma kekahi wahi o ke kino.
• Pōkole o ka hanu.
• Ka luaʻi ʻana a i ʻole ka maʻi pākī.

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

• Pono anei au e ʻike i kahi mea hoʻoponopono kino e hoʻomaikaʻi i ka ikaika o nā ʻiʻo o kaʻu keiki?
• Aia kekahi mau hopena ʻaoʻao mai nā lāʻau lapaʻau i kuhikuhi ʻia no nā hōʻailona o kaʻu keiki?
• Inā he mea lawe wau i ka gene mutated, aia anei iaʻu ka pilikia o ka loaʻa ʻana o kahi keiki me ka `Ataxia-Telangiectasia (AT)`?

ʻO ka hoʻomaopopo ʻana i ka maʻi o kāu keiki ʻo 'Ataxia-Telangiectasia (AT)' hiki ke lilo i mea paʻakikī loa a kaumaha hoʻi no ʻoe ma ke ʻano he mea mālama. Eia nō naʻe, e hāʻawi kāu kauka iā ʻoe i kahi hoʻolālā lapaʻau maikaʻi i hoʻopilikino ʻia i nā hōʻailona o kāu keiki. ʻO ka mea nui loa, ʻo ia ke hāʻawi i kāu keiki i ke aloha a me ke kākoʻo e pono ai lākou i ko lākou ola a pau. Eia kekahi, e makaʻala i nā hōʻailona hou e kū mai ana, e mālama koke iā lākou, a e hoʻāʻo e hoʻolōʻihi i ke ola o kāu keiki i ka hiki.

## Nā mea nui e hoʻomanaʻo (Leka Lawe-Home)

He maʻi hoʻoilina laha ʻole ka Ataxia-Telangiectasia (AT) i hiki ke loaʻa ka hopena nui i kahi keiki a me ko lākou ʻohana. He mea maʻamau ka makaʻu a me ka hopohopo i ka wā e aʻo ai e pili ana i ia mea.

• He mea nui e ʻike i nā hōʻailona mua : E ʻimi i ke kōkua lapaʻau inā ʻike ʻoe i kahi loli i ke ʻano hele wāwae o kāu keiki, ke kaulike, ka paʻakikī i ka ʻōlelo ʻana, a i ʻole nā ​​​​kiko ʻulaʻula ʻē ma ka ʻili/maka.
• ʻOiai ʻaʻohe lāʻau lapaʻau no kēia, hiki ke mālama ʻia nā hōʻailona : hiki i ka mālama kūpono a me nā lawelawe kākoʻo ke kōkua i ka hoʻomaikaʻi ʻana i ke ola o ke keiki a hoʻolōʻihi i ko lākou ola.
• E mālama i kou palekana : ʻOi aku ka nui o ka pilikia o nā keiki me ka `AT` i ka loaʻa ʻana o nā maʻi. No laila e makaʻala i nā hōʻailona o ka maʻi a e ʻimi koke i ka lāʻau lapaʻau.
• ʻAʻole ʻoe hoʻokahi : ​​Hiki iā ʻoe a me kāu keiki ke loaʻa ke kākoʻo āu e pono ai mai nā kauka, nā kākā'ōlelo genetic, a me nā hui kākoʻo.
• ʻO ke aloha a me ke kākoʻo nā mea nui loa : ʻO kou aloha, ke ahonui, a me ke kākoʻo nā mea waiwai nui loa no kāu keiki i kēia huakaʻi.

Manaʻolana wau ua kōkua kēia ʻike iā ʻoe e hoʻomaopopo i kēia kūlana paʻakikī. Inā he mau nīnau hou aku kāu, mai kānalua e kamaʻilio me ke kauka.

ʻAtaxia -telangiectasia, AT, Louis-Bar syndrome, nā maʻi genetic, ʻōnaehana nerve, ʻōnaehana pale, nā maʻi neʻe, nā maʻi laha ʻole, nā maʻi pediatric