Nā holomua i ka ʻenehana a me nā pono hana no ka Spinal Muscular Atrophy

Anter

• 3-D paʻi exoskeletons
• Nā kaohi kaiapuni
• Nā Noho Huila
• Nā Papa
• Polokalamu nānā maka
• Nā lole kōkua
• ʻO ka lawe lawe ʻana

ʻO ka atrophy muscular musinal (SMA) kahi kūlana kūlohelohe. Kuhi ia i nā pilikia me nā neurons kaʻa e hoʻopili i ka lolo a me ka iwi kuamoʻo. ʻO ka hele wāwae, ka holo ʻana, ka noho ʻana i luna, ka hanu ʻana, a me ka moni ʻana paha he mea paʻakikī ia no ka poʻe me SMA. Pono kēlā mau mea me SMA i ka laulā o nā pono olakino loea.

ʻAʻohe mea ola i kēia manawa no SMA. Akā he nui nā holomua ʻenehana hou a pīhoihoi hoʻi. Hiki i kēia mau mea ke hāʻawi aku i ka poʻe me SMA i ka holomua o ka neʻe, nā hoʻomaʻamaʻa maikaʻi, a me ke ʻano o ke ola i ʻoi aku.

3-D paʻi exoskeletons

ʻO ka exoskeleton mua loa no nā keiki me SMA i lilo i 2016. Ua hiki i kēia manawa ke paʻi i kahi prototype ʻekolu dimensional o ka hāmeʻa mahalo i nā holomua i ka ʻoihana paʻi paʻi 3-D. Hiki i ka hāmeʻa ke kōkua i nā keiki e hele wāwae no ka manawa mua. Hoʻohana ia i nā koʻokoʻo kākoʻo lōʻihi, kūpono i nā wāwae o ke keiki a me ke kino. Hoʻohui pū kekahi i nā pūnaewele i hoʻopili ʻia i kahi kamepiula.

Nā kaohi kaiapuni

ʻOi aku ka liʻiliʻi o ka poʻe kelepona me nā SMA. Hiki i nā hana maʻalahi e like me ke pio ʻana i nā kukui ke paʻakikī. ʻ ʻ ʻ ʻ ʻ ʻ ʻ ʻ ʻ ʻ ʻ U n o n n n o n i n i n o n a n a a a a a a a a a a a ā i ā l āo e āl ā ā ā ā ā ā ā ā ā ā ā ā ā ā ā ō ō lākou. Hiki iā lākou ke kaohi uila ʻole i kā lākou kīwī, aircon, kukui, mea pāʻani DVD, mea haʻi leo, a me nā mea hou aʻe. ʻO ka papa a me ka kamepiula wale nō kā lākou e makemake ai.

Hele pū kekahi mau mea hoʻokele me kahi microphone USB. Hiki i nā kauoha leo ke hoʻoulu i ka lawelawe. Hiki iā ia ke hoʻokomo i kahi pūlima pōpilikia e kāhea no ke kōkua me ka pihi o ke pihi.

Nā Noho Huila

Ua hele lōʻihi kahi ʻenehana noho huila. Hiki paha i ka mea hoʻoponopono hana o kāu keiki ke haʻi iā ʻoe e pili ana i nā koho huila huila e loaʻa ana. ʻO kahi laʻana ʻo Wizzybug, he noho huila e holo ai nā kamaliʻi. ʻO ka noho huila no ka hoʻohana o loko a me waho. Hana ʻia me nā kaohi maʻalahi.

ʻO nā tricycle Adaptive kahi koho ʻē aʻe. Hāʻawi lākou i kāu keiki i ka hiki ke launa pū me kā lākou mau hoa a loaʻa kekahi hoʻoikaika kino.

Nā Papa

Liʻiliʻi a maʻalahi hoʻi ka mālama ʻana o nā papa ma mua o nā kamepiula lawe a i ʻole PC ʻoneki. Hoʻonohonoho ʻia lākou no kāu keiki. Hiki iā lākou ke hoʻopili i ka ʻike leo, nā mea kōkua uila (e like me Siri), a me nā hiʻohiʻona ʻē aʻe. Hiki ke hoʻonohonoho ʻia kēia mau mea me nā kau, nā kuapo, nā stylus, nā papapihi hiki ke loaʻa, a me nā kaohi lima lima.

ʻO nā mea pono no nā noho huila e ʻae iā ʻoe e kau i kahi kelepona paʻalima a i ʻole papa i ka noho huila.

Hāʻawi nā papa i kāu kamaliʻi i ka hiki ke mākaʻikaʻi, ʻoiai inā ʻaʻole hiki iā lākou ke neʻe a puni ka nui. No nā keiki ʻoi aku ka nui, hiki i ka pākaukau ke pāʻani i kahi mea kani e like me ka pahu i ka pā kula. Hiki ke hoʻopili ʻia nā polokalamu no nā mea kani i kahi amp i hiki i kāu keiki e aʻo e pāʻani.

Polokalamu nānā maka

Hāʻawi ka polokalamu nānā maka, e like me ka ʻenehana i hoʻomohala ʻia ma EyeTwig, i kahi koho ʻē aʻe no ka launa ʻana o ke kamepiula. Kuhi a ʻike ia i ka neʻe ʻana o ke poʻo o kāu keiki e hoʻohana ana i ka pahupaʻiwikiō ma kāu kamepiula a i ʻole ka papaha.

Nā lole kōkua

Kūkulu pono ʻia ʻo Orthoses i ka lole, e like me ka Playskin Lift, ʻoi aku ka liʻiliʻi ma mua o ka exoskeletons. Kōkua nā mea hoʻokomo mīkini ma nā lole i nā keiki liʻiliʻi e hāpai i ko lākou mau lima. loaʻa i ka ʻenehana inexpensive, maʻalahi e hoʻohana, hana a me ka ʻoluʻolu. E hiki koke mai nā mana hou a hoʻomaikaʻi ʻia o ka ʻenehana.

ʻO ka lawe lawe ʻana

ʻAʻole hoʻomaikaʻi wale nā ​​hāmeʻa a me nā lāʻau hou e like me kēia i ka maikaʻi o ke ola o kēlā mau mea me SMA. Hāʻawi pū lākou iā lākou i ka maʻalahi nui aʻe e komo i nā ʻano āpau o ka mea a ka poʻe e noʻonoʻo ai i kahi ola "maʻamau".

ʻO nā hoʻolālā Exoskeleton, nā polokalamu hiki ke kiʻi ʻia, a me nā lāʻau hou wale nō ka hoʻomaka o nā holomua ʻenehana hou.Hiki i kēia mau hoʻomaikaʻi āpau ke kōkua me ka mālama ʻana no SMA a me nā maʻi muscular ʻē aʻe.

Kāhea aku i kāu hui mālama SMA kūloko no ka ʻike e pili ana i ka ʻinikua uhi, nā hoʻolimalima, a me ka papa inoa o nā nonprofits i hiki ke kōkua. Hiki iā ʻoe ke hoʻokaʻaʻike pololei i ka ʻoihana e ʻike inā hāʻawi lākou i nā hoʻolimalima, ke kālā ʻana, a i ʻole nā ​​hōʻemi.