Loaʻa i kāu keiki kēia mau hōʻailona? E kamaʻilio kākou e pili ana i ka Fragile X Syndrome (FXS)

Ua ʻike paha ʻoe ua lohi ka ulu ʻana o kāu keiki liʻiliʻi a i ʻole he ʻano ʻē kekahi o kā lākou ʻano. Malia paha ua lohi lākou i ka ʻōlelo ʻana, a ʻaʻole paha lākou makemake e launa pū me nā keiki ʻē aʻe. I kekahi manawa, ma hope o kēia mau mea, aia paha kahi maʻi i kapa ʻia ʻo Fragile X Syndrome (FXS). Mai makaʻu i kou lohe ʻana i kēia inoa. E kamaʻilio kākou e pili ana i ia mea me nā kikoʻī hou aku i kēia lā, ma ke ʻano maʻalahi loa, ʻae?

He aha ka Fragile X Syndrome?

I ka ʻōlelo maʻalahi, ʻo ka Fragile X Syndrome kahi maʻi genetic i hoʻoili ʻia mai kēlā hanauna a i kēia hanauna . Hiki iā ia ke hana i kahi keiki e loaʻa i kekahi mau loli kino, nā pilikia ʻano, a me nā pilikia olakino like ʻole. Eia kekahi laʻana:

• Nā lohi o ka ulu ʻana o ke keiki.
• Nā kīnā noʻonoʻo.
• Nā kīnā aʻo.
• Hopohopo pinepine.
• ʻO ka paʻakikī i ka hoʻolohe ʻana a me ka hyperactivity, kahi kūlana i ʻike ʻia ʻo ka Attention-deficit/hyperactivity disorder (ADHD).
• Hiki paha iā ia ke hōʻike i nā hōʻailona o ka maʻi autism spectrum.

Ua kapa ʻia ʻo "Fragile X" no ka mea ke nānā ʻia ka chromosome X ma lalo o kahi microscope, ʻike ʻia kekahi ʻāpana o ia mea he "haʻihaʻi" a "palupalu paha." ʻO kekahi inoa no ia mea ʻo Martin-Bell syndrome. ʻO kēia kekahi o nā maʻi noʻonoʻo a me ka ulu ʻana i hoʻoilina maʻamau (IDDs).

Pehea ka maʻamau o kēia ʻano?

ʻAʻole maopopo i nā kānaka noiʻi i ka nui o ka poʻe o ka honua i loaʻa i ka Fragile X Syndrome, akā ua manaʻo lākou he hoʻokahi i loko o 11,000 mau kaikamahine a hoʻokahi i loko o 7,000 mau keikikāne e loaʻa i ke ʻano.

He aha nā hōʻailona o ka Fragile X Syndrome?

Hiki i ka Fragile X Syndrome ke hoʻopilikia i ka naʻauao o kāu keiki, ke olakino noʻonoʻo, ke ʻano kino, a me ke ʻano. E nānā kākou i nā hōʻailona maʻamau i kēlā me kēia wahi.

Nā pilikia e pili ana i ka naʻauao

• Nā pilikia aʻo: Hiki ke paʻakikī ke aʻo a hoʻomanaʻo i nā mea hou.
• Ka IQ i emi iho: I ka wā e ʻelemakule ai ke kanaka, e emi iki paha kā lākou mau helu IQ.
• Nā hanana holomua i lohi i ka wā kamaliʻi: No ka laʻana, hiki paha iā lākou ke lohi ma mua o nā keiki ʻē aʻe i ka hoʻomaka ʻana e hele, kamaʻilio, a ʻai kūʻokoʻa.
• Nā hemahema o ke kamaʻilio waha ʻole: ʻO ke ʻano kēia he paʻakikī paha ke hōʻike i nā manaʻo me ka hoʻohana ʻana i nā ʻanā lima, nā helehelena o ka helehelena, a me nā ʻano hōʻailona waha ʻole ʻē aʻe.
• Nā pilikia e hoʻomaopopo ana a me ka ʻōlelo ʻana i ka ʻōlelo:Ma kahi o ʻelua makahiki, e ʻike paha ʻoe he pilikia kāu keiki i ka ʻōlelo ʻana a me ka hoʻomaopopo ʻana i nā huaʻōlelo.
• Ka paʻakikī e hoʻoponopono i nā pilikia makemakika.

E hōʻoia e nānā i ka ulu ʻana o kāu keiki no kekahi o kēia mau lohi. He mea nui e kamaʻilio me kāu kauka e pili ana i nā pae hoʻomohala kūpono no kēlā me kēia makahiki a pehea e loiloi pono ai iā lākou.

Nā pilikia olakino noʻonoʻo

• Ka hopohopo pinepine.
• Nā kūlana e like me ke kaumaha .
• He pono nui e hana hou a noʻonoʻo paha i kekahi mau mea (nā ʻano hana obsessive-compulsive).

Nā ʻano kino

ʻAʻole like kēia mau hōʻailona i nā kānaka a pau, akā ʻo kekahi o nā hōʻailona maʻamau:

• He helehelena lōʻihi a wīkī.
• He lae nui.
• He mea nui.
• Nā pepeiao nui.
• Nā maka keʻa (strabismus).
• ʻO nā manamana lima e palupalu loa ana, a i ʻole "pālua-hui".
• Nā wāwae pālahalaha.
• Hoʻonui ʻia nā hua manu o nā keikikāne ma hope o ka wā ʻōpio.
• Laulaha kiʻekiʻe.
• ʻAʻohe ikaika o nā ʻiʻo (hypotonia), ʻo ia hoʻi, he palupalu iki paha ke kino.

He aha nā pilikia pili i ka hana?

Hiki i ka Fragile X Syndrome ke hana i nā ʻano pilikia like ʻole i loko o kahi keiki. Eia kekahi laʻana:

• Ka paʻakikī i ka hoʻolohe ʻana a me ka hyperactivity (ADHD).
• Hopohopo pilikanaka a me ka hilahila. E noʻonoʻo, ke hele ʻoe i kahi pāʻina ma ka hale o kahi hoahānau, e noho mamao ʻoe mai nā poʻe ʻē aʻe a nānā i lalo ke ʻōlelo kekahi.
• Nā hana e like me ke kuʻi lima ʻana a i ʻole ke nahu ʻana.
• Ka hoʻokaʻulua ʻole e nānā maka.
• Nā maʻi ʻike - ʻO ke ʻano kēia he hypersensitivity paha ʻoe i nā mea e like me nā wahi piha kanaka, kekahi e hoʻopā ana i kou kino, ka walaʻau, kekahi mau meaʻai, a me nā lole. I kekahi manawa e pūʻiwa paha ʻoe i kahi leo liʻiliʻi loa, a i ʻole e ʻōlelo paha ʻoe ʻaʻole hiki iā ʻoe ke ʻai i kekahi mau meaʻai.
• Ke paʻakikī i ka hoʻomaopopo ʻana i nā manaʻo o haʻi a me nā ʻike pilikanaka.

He aha ke kumu o ka Fragile X Syndrome?

ʻO kēia ma muli o kahi hoʻololi genetic i loko o ka gene `FMR1` i loaʻa ma kā mākou chromosome X. Ke kuhikuhi nei kēia gene `FMR1` i ko mākou kino e hana i kahi protein i kapa ʻia ʻo `FMRP`. He mea nui loa kēia protein `FMRP` no ka hoʻomohala ʻana i nā pilina `(synapses)` ma waena o nā cell nerve. Ma o kēia mau `synapses` e hele ai nā impulses nerve `(nerve impulses)`.

Ma muli o kahi mutation i loko o ka gene FMR1, ua lilo kahi ʻāpana o ka DNA i kapa ʻia ʻo CGG triplet repeat i ʻoi aku ka lōʻihi ma mua o ka maʻamau. ʻO ka maʻamau, hana hou ʻia kēia ʻāpana ma kahi o 5 a 40 mau manawa, akā i ka poʻe me Fragile X Syndrome, hana hou ʻia ma mua o 200 mau manawa .ʻO kēia ke kumu e "pale ʻia ai ka gene `FMR1`", ʻo ia hoʻi, ʻaʻole hiki iā ia ke hana pono i ka protein `FMRP`. Hoʻopilikia kēia i ka ʻōnaehana nerve o ke keiki a ke kumu o nā hōʻailona o Fragile X Syndrome.

Pehea e hoʻoili ʻia ai kēia mai kēlā hanauna a i kēia hanauna? (ʻAno Hoʻoilina)

Ua hoʻoilina ʻia ka Fragile X Syndrome ma ke ʻano X-linked dominant. ʻO ke ʻano kēia, aia ka gene i hoʻololi ʻia e hoʻokumu ai i ia mea ma ka chromosome X. He "dominant" ia no ka mea, ʻo ka loaʻa ʻana o hoʻokahi kope o ka gene i hoʻololi ʻia ua lawa ia e hoʻoulu ai i ka maʻi.

ʻOi aku ka maʻamau o ka Fragile X Syndrome i nā keikikāne a ʻoi aku ka koʻikoʻi o nā hōʻailona no ka mea hoʻokahi wale nō chromosome X ko lākou. ʻElua mau chromosome X ko nā kaikamahine . No laila, inā he mutation kekahi chromosome X, ʻaʻole paha e hōʻike kekahi chromosome X olakino i nā hōʻailona a he mea lawe wale nō paha. Eia nō naʻe, loaʻa mau nā hōʻailona i nā keikikāne me Fragile X.

Aia kekahi mau pilikia olakino ʻē aʻe no nā mea lawe Fragile X?

ʻAe, he mea nui loa ia. Inā loaʻa i kāu keiki ka Fragile X Syndrome, pono ʻoe e haʻi i kāu kauka e pili ana i ia mea. No ka mea he mea lawe paha ʻoe, ua piʻi paha kou pilikia olakino, e like me:

• Hana ʻia ka menopause ma mua o 40 mau makahiki.
• Nā maʻi e pili ana i ka hoʻomanaʻo e like me ka dementia.
• Ke koko kiʻekiʻe.
• Kaumaha.
• Hopohopo.
• Nā migraines.
• Ka emi ʻana o ka hana o ka thyroid gland (Hypothyroidism).
• ʻEha mau loa.
• ʻAneʻane hiamoe.

He aha nā pilikia e hiki ke loaʻa mai ka Fragile X Syndrome?

I kekahi manawa hiki i ka poʻe me ka Fragile X Syndrome ke loaʻa i nā maʻi olakino ʻē aʻe. Ma kekahi noiʻi, ua hōʻike nā mākua ua loaʻa pū i kā lākou mau keiki:

• Nā ʻōʻili.
• Nā pilikia hiamoe. Ua ʻike ʻia ma kekahi noiʻi ʻē aʻe he 4 o 10 mau keiki me ka maʻi Fragile X a me ka autism spectrum i loaʻa nā pilikia hiamoe, hoʻohālikelike ʻia me 3 o 10 mau keiki me Fragile X wale nō.
• Ka huhū a i ʻole ka huhū. ʻOi aku ka nui o ka huhū o nā keiki me Fragile X, ʻoiai ka poʻe me ka maʻi autism spectrum.
• Nā hana hōʻeha ponoʻī.
• Ka momona.

Pehea e ʻike ʻia ai ka Fragile X Syndrome?

No ka ʻike ʻana i ka Fragile X Syndrome, lawe ʻia kahi hāpana DNA mai ke koko o kāu keiki a i ʻole nā ​​​​ʻiʻo ʻē aʻe.E lawe ke kauka i ka hāpana a hoʻouna aku i kahi keʻena hoʻokolohua. Ma laila, e nānā lākou e ʻike inā loaʻa i ke keiki ka mutation i ʻōlelo ʻia ma mua ma ka gene `FMR1`.

Inā hāpai ʻoe a manaʻo ʻoe he Fragile X Syndrome paha kāu keiki, hiki iā ʻoe ke hālāwai me kahi kākā'ōlelo genetic a loaʻa nā hoʻokolohua prenatal e like me:

• Amniocentesis: Pili kēia i ka lawe ʻana i kahi hāpana o ka wai amniotic i loko o ka ʻōpū a hoʻāʻo iā ia.
• Ka laʻana ʻana o Chorionic villus: Pili kēia i ka lawe ʻana i kahi hāpana o nā cell mai ka placenta a hoʻāʻo iā lākou.

I ka makahiki hea e ʻike pinepine ʻia ai kēia maʻi?

ʻIke ʻia ka hapa nui o nā keikikāne ma kahi o 35-37 mau mahina o ka makahiki . Hiki ke ʻike ʻia nā kaikamahine ma hope iki, ma kahi o 42 mau mahina o ka makahiki . Eia nō naʻe, e ʻike paha ʻoe i kekahi mau hōʻailona i ka wā mua o 12 mau mahina.

He aha nā nīnau e hiki i ke kauka ke nīnau e kōkua i ka ʻike ʻana i ka maʻi?

Ma mua o ke kauoha ʻana o ke kauka a i ʻole ke kākāʻōlelo genetic a kāu keiki i kahi hoʻāʻo Fragile X Syndrome, hiki iā lākou ke nīnau iā ʻoe i nā nīnau e like me kēia:

• He aha nā hōʻailona āu i ʻike ai i kāu keiki?
• Pehea e aʻo ai kāu keiki i nā mea hou?
• Ua hilahila kāu keiki?
• He pilikia hiamoe paha kāu keiki?
• Ke hopohopo mau nei kāu keiki?
• Ke pale nei kāu keiki i ka nānā maka ʻana aku?
• He mau hiʻohiʻona ʻē ke ʻano o kāu keiki ma kona kino?
• Pehea ke akamai o kāu keiki i ka ʻōlelo?

Hiki ke ʻike ʻia ka Fragile X Syndrome i ka wā makua?

ʻOiai ʻike pinepine ʻia ka Fragile X Syndrome i ka wā kamaliʻi, aia ʻelua mau syndromes ʻē aʻe i loko o ka ʻohana Fragile X e hoʻopilikia nei i nā pākeke. ʻO lākou kēia:

• ʻO ka maʻi tremor/ataxia e pili ana i ka X Fragile (FXTAS): ʻO nā hōʻailona e pili ana i nā pilikia kaulike, nā lima haʻalulu, ka paʻa ʻole o ka naʻau, ka nalowale o ka hoʻomanaʻo, nā pilikia noʻonoʻo, a me ka mae ʻole o nā lālā.
• ʻO ka lawa ʻole o ka ovarian mua e pili ana i ka Fragile X (FXPOI): ʻO nā hōʻailona e komo pū me ka emi ʻana o ka momona, ka paʻakikī o ka hāpai ʻana, nā wā menstrual kūpono ʻole a hala ʻole paha, a me ka menopause mua.

Inā loaʻa iā ʻoe nā hōʻailona e like me kēia, ʻoi aku ka maikaʻi o ke kamaʻilio ʻana me ke kauka.

Pehea e mālama ʻia ai ka Fragile X Syndrome?

ʻAʻohe lāʻau lapaʻau kūikawā no ka Fragile X Syndrome.Eia nō naʻe, hiki ke mālama ʻia nā hōʻailona o kēia maʻi. Hiki i ke kauka o kāu keiki ke kuhikuhi i nā ʻano lāʻau like ʻole. Eia kekahi mau laʻana, i hoʻokaʻawale ʻia e nā hōʻailona:

• ʻEpilepsy a i ʻole ka paʻa ʻole o ka naʻau:
• Litiuma kalapona
• ʻO Gabapentin (Neurontin®)
• No ka ADHD:
• ʻO Methylphenidate (Ritalin®, Concerta®) a me dextroamphetamine (Adderall®, Dexedrine®)
• ʻO Venlafaxine (Effexor®) a me nefazodone (Serzone®)
• No ka maʻi obsessive-compulsive (OCD):
• ʻO Fluoxetine (Prozac®)
• ʻO Sertraline (Zoloft®) a me citalopram (Celexa®)
• No nā pilikia hiamoe:
• ʻO Trazodone (Desyrel®)
• Melatonin

He papa inoa liʻiliʻi wale nō kēia o nā lāʻau lapaʻau a kāu kauka e kuhikuhi ai. E hōʻoia e kūkākūkā i nā hopena ʻaoʻao a me nā pilikia o kēlā me kēia lāʻau lapaʻau me kāu kauka.

Ma waho aʻe o ka lāʻau lapaʻau, ʻōlelo pinepine ke kauka i ka psychotherapy , ʻo ia kekahi ʻano o ka lāʻau lapaʻau e kōkua ai i ke keiki e ola me ke kūlana a kaohi i kā lākou ʻano.

He aha ka wā e hiki mai ana no ka poʻe me ka Fragile X Syndrome?

Hiki i kekahi poʻe me ka Fragile X Syndrome ke noho kūʻokoʻa. Hōʻike nā haʻawina e ulu ana ma kahi o 4 i loko o 10 mau kaikamahine a me 1 i loko o 10 mau keikikāne me Fragile X a kūʻokoʻa loa. ʻOi aku ka nui o nā kaikamahine ma mua o nā keikikāne e:

• Ka heluhelu ʻana i nā puke me nā manaʻo hou a me nā huaʻōlelo hou.
• Ke ʻōlelo ʻana i nā ʻōlelo paʻakikī.
• Ke kamaʻilio ʻana ma ka wikiwiki maʻamau.

ʻOi aku ka ʻino o ka maʻi Fragile X i nā keikikāne. Ma kahi o 8 i loko o 20 mau kaikamahine me Fragile X ʻaʻole pono ke kōkua me nā hana o kēlā me kēia lā. Akā, hoʻokahi wale nō i loko o 20 mau keikikāne e pono ai ke kōkua. ʻOiai he nui nā kaikamahine e puka ana mai ke kula kiʻekiʻe, ʻaʻole ka hapa nui o nā keikikāne. Ma kahi o ka hapalua o nā wāhine me Fragile X e hana manawa piha, akā, ʻelua wale nō i loko o 10 mau keikikāne e hana nei.

Hiki i kaʻu keiki ke hele i ka mālama keiki/kula?

ʻAe, akā pono paha kāu keiki i nā hoʻokipa kūikawā ma ke kula hānai keiki a i ʻole ke kula. Pono paha e hoʻoponopono ʻia kekahi mau ʻāpana o ka lā kula a me ka lumi papa e kūpono i ko lākou mau pono. Hiki paha i ke kumu o kāu keiki ke hana i kekahi mau hoʻololi i ke kaiapuni a me ka papa hana.

Nā loli e pili ana i ke kaiapuni:

• Ka mālama ʻana i ka haumia o ka walaʻau ma ka pae haʻahaʻa.
• Ka mālama ʻana i ka mālamalama kūlohelohe.
• Ke pale nei i nā wahi piha kanaka.

Nā hoʻololi e pili ana i ka papa hana:

• Ke hoʻohana nei i nā mea kōkua ʻike maka e like me nā kiʻi, nā ʻaoʻao kala, a me nā kiʻi paʻi.
• Ke kōkua ʻana i nā keiki e aʻo ma o ka hoʻohana ʻana i nā mea a lākou i ʻike ai he mea hoihoi loa .
• Ke kuhikuhi ʻana i ke keiki e hana ma nā hui liʻiliʻi .

E hōʻoia e hoʻomaopopo i ke kula ua loaʻa i kāu keiki ka Fragile X Syndrome. E kamaʻilio me ke kumu e pili ana i ko lākou mau pono kūikawā. Makemake paha ʻoe e ʻike i kahi loea noʻonoʻo kula a/a i ʻole kākāʻōlelo. Hana lākou me nā keiki ma luna o 3 mau makahiki. ʻO nā loea ʻē aʻe āu e makemake ai e hoʻokaʻaʻike aku:

• Nā mea lapaʻau hana
• Nā mea hoʻoponopono ʻano
• Nā kauka ʻōlelo
• Nā limahana kaiaulu

E noi i kāu kula kūloko a me nā mea lawelawe mālama ola kino no ka ʻike hou aku e pili ana i kēia.

Pehea ka lōʻihi o ke ola o ka Fragile X Syndrome? He aha ka manaʻolana e ola ai?

He maʻi ia no ke ola holoʻokoʻa ka Fragile X Syndrome. ʻAʻohe lāʻau lapaʻau kūikawā no ia.

Eia nō naʻe, ʻaʻohe o nā hōʻailona o ka Fragile X Syndrome e hoʻoweliweli i ke ola. No laila, ua like ke ola o kēia poʻe me ke kanaka maʻamau.

Hiki ke pale ʻia ka Fragile X Syndrome?

ʻAʻole, he maʻi hoʻoilina ka Fragile X Syndrome a ʻaʻole hiki ke pale ʻia. Inā ʻoe e hoʻolālā ana e hāpai, a i ʻole ua hāpai mua ʻoe, he mea kūpono ke kamaʻilio ʻana me kahi kākāʻōlelo hoʻoilina e pili ana i ka pilikia o kāu keiki e hoʻoilina i kēia maʻi.

Pehea ke ʻano o ke ola me ka Fragile X Syndrome?

ʻAʻole like ka hopena o ka Fragile X Syndrome i kēlā me kēia keiki. Hiki i ka hui lapaʻau o kāu keiki ke hāʻawi iā ʻoe i kahi manaʻo maikaʻi aʻe pehea e pili ai i kāu keiki a me kou ʻohana. ʻOiai hiki ke paʻakikī kekahi mau ʻano o ke kūlana, nui nō hoʻi nā hiʻohiʻona maikaʻi. No ka laʻana, ua ʻike nā kānaka noiʻi i nā poʻe me Fragile X:

• He mea kōkua ia.
• ʻOluʻolu.
• Ke noʻonoʻo nei i nā poʻe ʻē aʻe.
• Aloha.
• Hiki ke hoʻohālike maikaʻi ʻia.
• Maikaʻi ka hoʻomanaʻo ʻike a me ka hoʻomanaʻo lōʻihi.
• Makemake au i nā ʻakaʻaka a ʻike wau he mea hoʻomākeʻaka lākou.

Pehea e hiki ai iaʻu ke kōkua i kahi hoaaloha/ʻohana me ka Fragile X Syndrome?

E ʻike pono i ka hiki. E ʻimi i nā hui kākoʻo a me nā kumuwaiwai kaiāulu e hiki ke kōkua iā ʻoe a me lākou. He kūpono paha nā papahana mākaukau ola. Hāʻawi kekahi i ke alakaʻi ʻana i nā mea e like me:

• Nā hana pilikanaka.
• Moe kolohe.
• Nā hana leʻaleʻa.
• Hoʻonaʻauao.
• Nā Hana.

He mea nui e kākoʻo ʻoe i kāu keiki i mea e loaʻa ai iā lākou ka mālama e pono ai a loaʻa iā lākou ke ʻano maikaʻi loa o ke ola.

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

E lawe i kāu keiki i ke kauka keiki ke ʻike koke ʻoe i nā hōʻailona o ka Fragile X Syndrome. Mai hoʻokaʻulua, no ka mea, he mea nui loa ke komo mua ʻana.

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

Eia kekahi mau nīnau hiki iā ʻoe ke nīnau i kāu kauka i ke kūkākūkā ʻana i kāu hōʻailona:

• Pono anei kaʻu keiki e ʻike i kahi loea?
• He aha ke ʻano o nā mea hoʻōla kino e pono ai kaʻu keiki e ʻike?
• Pehea ke koʻikoʻi o ka Fragile X Syndrome?
• He aha ka lāʻau lapaʻau kūpono no kaʻu keiki?
• Pehea e hiki ai iaʻu ke kōkua i kaʻu keiki?
• He aha kaʻu mau koho hana komo mua?
• Pehea lā e hiki ai iā kākou ma ke ʻano he ʻohana ke kōkua i kaʻu keiki?

Hiki ke paʻakikī ka ʻike ʻana i ka Fragile X Syndrome nou a me kāu keiki. ʻO ia ka hoʻomaka ʻana o nā loli a me nā hoʻoponopono he nui. ʻO nā mea e like me ka therapy, ka lāʻau lapaʻau, a me nā hale kula i kēia manawa he ʻāpana o ke ola o kāu keiki. ʻOiai ʻoe e kōkua ana i kāu keiki, mai poina i kāu mau pono ponoʻī. E hoʻomanaʻo, ʻo ka loaʻa ʻana o kāu keiki me ka Fragile X Syndrome ʻo ia hoʻi, ʻoi aku ka nui o kou pilikia no kekahi mau kūlana olakino ʻē aʻe, e like me ke kaumaha a me ka migraines.

ʻO ka mea hope loa, nā mea e hoʻomanaʻo ai

No laila, ua kamaʻilio nui mākou e pili ana i ka Fragile X Syndrome i kēia lā. Eia kekahi mau mea koʻikoʻi e hoʻomanaʻo ai:

• He kūlana hoʻoilina kēia, ʻo ia hoʻi, ua hoʻoilina ʻia.
• He ola kēia no ke ola a pau, akā hiki ke mālama ʻia nā hōʻailona.
• He mea nui loa ka ʻike mua ʻana, ka mālama mua ʻana, a me ka hoʻomaka ʻana o nā lawelawe hoʻōla e pono ai no ka ulu ʻana o ke keiki.
• E like me ke keiki, pono ʻoe i ke kākoʻo. He mea paʻakikī ke alo i kēia mau mea mehameha.
• ʻOiai he mau pilikia me kēia kūlana, he nui nā mea maikaʻi a me nā hiki o kēia mau keiki.

Manaʻolana wau he mea kōkua kēia ʻike iā ʻoe. Inā he mau nīnau hou aku kāu, e ʻoluʻolu e kamaʻilio me kāu kauka.

ʻO ka maʻi fragile x, fxs, maʻi genetic, lohi o ka ulu ʻana, kīnā noʻonoʻo, olakino keiki, kīnā aʻo