From CharliesFight.Org
Charlies condition is caused by a disruption in the mitochondria, the part of the cell that provides energy to his muscles, kidneys and brain. There is a new treatment available which is a nucleoside bypass therapy, which could potentially repair Charlie’s mtDNA and help it synthase again by giving him the naturally occurring compounds that his body isn’t able to produce.
We are running out of precious time with our baby, he can’t have this treatment in the UK so our only hope now is to get Charlie to America – this will obviously cost us a ridiculous amount of money, money we unfortunately don’t have enough of....
כך מקובלני מבית אבי אבא אפי' חרב חדה מונחת על צוארו של אדם אל ימנע עצמו מן הרחמים
Hezekiah continued: I have received a tradition from the house of my father’s father, from King David, the founding father of the dynasty of kings of Judea: Even if a sharp sword rests upon a person’s neck, he should not prevent himself from praying for mercy.
(א) הַגּוֹסֵס, הֲרֵי הוּא כְּחַי לְכָל דְּבָרָיו. אֵין קוֹשְׁרִין לְחָיָיו, וְאֵין סָכִין אוֹתוֹ, וְאֵין מְדִיחִין אוֹתוֹ, וְאֵין פּוֹקְקִין אֶת נְקָבָיו, וְאֵין שׁוֹמְטִין הַכַּר מִתַּחְתָּיו, וְאֵין נוֹתְנִין אוֹתוֹ עַל גַּבֵּי חוֹל, וְלֹא עַל גַּבֵּי חַרְסִית וְלֹא עַל גַּבֵּי אֲדָמָה, וְאֵין נוֹתְנִין עַל כְּרֵסוֹ, לֹא קְעָרָה, וְלֹא מַגְרֵפָה, וְלֹא צְלוֹחִית שֶׁל מַיִם, וְלֹא גַּרְגִּיר שֶׁל מֶלַח, וְאֵין מַשְׁמִיעִין עָלָיו עֲיָרוֹת, וְאֵין שׂוֹכְרִין חֲלִילִין וּמְקוֹנְנוֹת, וְאֵין מְעַמְּצִין עֵינָיו עַד שֶׁתֵּצֵא נַפְשׁוֹ. וְכָל הַמְּעַמֵּץ עִם יְצִיאַת הַנֶּפֶשׁ, הֲרֵי זֶה שׁוֹפֵךְ דָּמִים. וְאֵין קוֹרְעִין, וְלֹא חוֹלְצִין, וְלֹא מַסְפִּידִין עָלָיו, וְלֹא מַכְנִיסִין עִמּוֹ אָרוֹן לַבַּיִת, עַד שֶׁיָּמוּת. וְאֵין פּוֹתְחִין עָלָיו בְּצִדּוּק הדִּין, עַד שֶׁתֵּצֵא נַפְשׁוֹ. הַגָּה: וְיֵשׁ אוֹמְרִים דְּאֵין חוֹצְבִין לוֹ קֶבֶר אַף עַל פִּי שֶׁאֵינוֹ עִמּוֹ בַּבַּיִת, עַד אַחַר שֶׁיָּמוּת (ריב''ש סִימָן קי''ד). אָסוּר לַחֲצֹב שׁוּם קֶבֶר לִהְיוֹת פָּתוּחַ עַד לְמָחָר שֶׁלֹּא יִקְבְּרוּ בּוֹ הַמֵּת בְּאוֹתוֹ הַיּוֹם, וְיֵשׁ סַכָּנָה בַּדָּבָר (רַבֵּנוּ יְרוּחָם בְּשֵׁם הר''י הֶחָסִיד זַ''ל). וְכֵן אָסוּר לִגְרֹם לַמֵּת שֶׁיָּמוּת מְהֵרָה, כְּגוֹן מִי שֶׁהוּא גּוֹסֵס זְמַן אָרֹךְ וְלֹא יוּכַל לְהִפָּרֵד, אָסוּר לְהִשָּׁמֵט הַכַּר וְהַכֶּסֶת מִתַּחְתָּיו, מִכֹּחַ שֶׁאוֹמְרִין שֶׁיֵּשׁ נוֹצוֹת מִקְצָת עוֹפוֹת שֶׁגּוֹרְמִים זֶה וְכֵן לֹא יְזִיזֶנּוּ מִמְּקוֹמוֹ. וְכֵן אָסוּר לָשׂוּם מַפְתְּחוֹת ב''ה תַּחַת רֹאשׁוֹ, כְּדֵי שֶׁיִּפָּרֵד. אֲבָל אִם יֵשׁ שָׁם דָּבָר שֶׁגּוֹרֵם עִכּוּב יְצִיאַת הַנֶּפֶשׁ, כְּגוֹן שֶׁיֵּשׁ סָמוּךְ לְאוֹתוֹ בַּיִת קוֹל דּוֹפֵק, כְּגוֹן חוֹטֵב עֵצִים, אוֹ שֶׁיֵּשׁ מֶלַח עַל לְשׁוֹנוֹ וְאֵלּוּ מְעַכְּבִים יְצִיאַת הַנֶּפֶשׁ, מֻתָּר לַהֲסִירוֹ מִשָּׁם, דְּאֵין בָּזֶה מַעֲשֶׂה כְּלָל, אֶלָּא שֶׁמֵּסִיר הַמּוֹנֵעַ (הַכֹּל בְּהַגָּהַת אַלְפָסִי פֶּרֶק אֵלּוּ מְגַלְּחִין).
One who is dying is like a living person for all his affairs. They do not dye his cheeks, and they do not anoint him, and they do not wash him...and they do not announce about him to the cities, and they do not hire flautists and lamenters, and they do not close his eyes, until his soul departs.... So too it is forbidden to cause a person's death to be hastened.... But if there is something there that is causing delay in the departure of the soul, such as if there is a banging noise next to that house, such as a wood chopper, or there is salt on his tongue, and these are preventing the departure of the soul, it is permitted to remove it from there, that in this there is no activity at all, rather he removes the barrier....
Commentary of the Pitchei Teshuva, YD 339:1
See the commentary of the Shevut Yaakov regarding a seriously ill person who was close to death; all of the doctors were disheartening him with their confidence that he would die within a day or two. However, they said that there was one other doctor who could potentially heal him, but the opposite could also happen - if he were to be unsuccessful in his procedure, the patient would die on the operating table. The rabbi was asked, in such a case, do we insist upon the sanctity of one hour of certain life (chaysheenan l'chayai sha'ah)?...
The rabbi responded that in this case we would allow the person to visit the doctor, despite the risk of immediate death, on account of the possibility of being healed.... however, this must be done in consultation with the doctors and wise people of the city, and assessed according to the majority opinion in the matter...
Rabbi Chaim Jachter, Gray Matter: Volume 3, 30.
Rav Moshe Feinstein (Teshuvot Igrot Moshe YD 3:36)...suggests that halacha allows prudent human judgment to determine when it is permissible to engage in risky activities. Indeed, halacha in general looks to societal norms to establish which behaviors involve tolerable risk.
From RightToTry.Org
"Right To Try" laws allow terminally ill patients who have exhausted all approved treatments and who cannot participate in a clinical trial to work with their doctors to access promising treatments being used in clinical trials. These laws allow doctors, patients, and the drug or device manufacturer to work together directly to help the very sickest patients who don’t have the time navigate the FDA’s complex expanded access process.