Kids who suffer from Juventile Huntington’s disease

November 11, 2017

In US, they cannot go for clinical trials till they reach 18 years old.  By then, it could be too late for these kids.
They have done nothing wrong to deserve this.  No trial means no hope.  Right now, the animals trials of UniCure is a success. 

UniCure Pharmaceutical company in Boston is having their human clinical trials in US.  It is a one time treatment.  All human trials will have danger with allergy to the drug..  This is their hope that maybe they can go for these trials to save them.

[11/11, 19:18] a lee7095: Please pray for this poor boy Ethan who is suffering from Juventile Huntington’s disease. No trial is allowed till they reach 18 in US. He also suffers from other issues.
[11/11, 19:18] a lee7095: Please share if u read this:

We need a huge prayer chain!!! My friends little boy with juvenile Huntington’s disease is suffering more than any child should and needs prayer and healing and comfort. Please share and ask friends to pray. The details are so brutal I won’t share but just know he needs prayers and positive thoughts!!!! Ty!!!!

I’ve been laying here unable to sleep thinking about this precious boy with juvenile Huntington’s disease and his mom. He is going through unimaginable and I mean UNIMAGINABLE circumstances right now due to this ungodly cruel awful disease. Ethan’s issues right now pale in comparison. Words cannot even do justice to the horror him and his family are going through right now. I ask all my friends to lift them in prayer for healing , strength m, pain Mgmt, and to help the drs make the best possible decisions for this sweet beautiful boy!!! Please start a prayer chain and share this. I have not put down names for privacy reasons. I’m begging you as a mom to please take a moment of your day to lift them in positive thoughts and prayer. This Mom has helped me so much through Ethan’s journey while going through her own struggles and watching her child suffer and has always taken time to answer my questions and give me wonderful advice. I love her and her son so much even though we are spread apart by distance but bonded by the cruel awful disease and live for our babies. Ty!!!!
#curejhd #liveinhope

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Why is my daughter so far away and thanks for ruining my life with no hope

November 8, 2017

I had an admin job with a tuition Center in Singapore.  Supposed to be for four months contract starting from 1st Oct last month.  They have three branches and i was supposed to go to the different branches each  day. I had one free day which can only be on weekdays.  My weekdays hours were from 12 noon to 7 pm.  My weekends hours are from 8.30 am to 6.30 pm.  My day off was on Fridays.  The principal and lady boss is from China and now Singaporean.   I hide the truth of my HD from her till two weeks ago.  She always will talk to us.  And she always want my plans for work.  She would prefer to have me being attentive and able to see when the teachers and the students arrived for classes. Whether they are late or absent.  And also to remember the tuition rates of different levels for different branches.  And also to write the bill letters to students and gave it to them so that they can pass them to their parents  reminding them of payment.  Also supposed to write the receipt according to what she wants.  And record the payment on to Excel.  I can do this but i cannot do it at Singapore speed.  Plus i have a tendancy to be focus on what i am doing.  I would be unable to observe if the teachers and the students who came in for classes.  I cannot stand. her Chinese writing for students and teachers on Excel. I do not like it when i cannot use. the registeation. number plus the names of the students.  Singapore is an English speaking country and Chinese is a second language.   I do not like it that she cannot tell me what to do instead. For example, when i was helping the manager who id a teacher too. And she would critize me.I do not like it when the manage and her talks about me, i am always theere making me small.  i quit in the end without jogging my HS to her.  She told me can think about what i can do in the future.  That was on Thursday.  Friday was my ogg day. On Saturday morning, i text her to find out where i am going. If not she would make noise if i followed the schedule without consultibg her first.  She asked again my schedule.  I told her i don’t understand what she had written.  So in the end, she got me off as i dontbknow what to do.  i did not really paid attention until my friend told me the meaning of her text.  Anyway i worked on Monday and she  told me to go to Tampines branch. I was out early.  But I took the blue line thinking that it will save my time.  Usually, i would take Purple line to Serangoon and change to another line to Pay a Lehar and from there only a couples of subway stops only and fast.  So i was very late by probably half an hour.  She was texting and i talked to her.  and i apogized. 

Truthfully speaking, i hate traveling to different t branches.  There are just too crowded in Singapore and tough to move due to the uncultured people here.  The rich ones the professionals.  Those who worked with military.  Not many angels are here.  I told her my HD and she asked a few questions and i replied. Told her i cannot recall.  And so on.  She does not have compassion like those in Singapore.  She also pay me with lower psy as she took away my Fridays and Sat and Sunday.   

I hate HD wrecking my life. 

Why must be so heartless that Chrysla is so far away from me. Why are you so heartless by not giving me money. 

Why are you so heartless that you refused to give. me back my share

Why am i so stupid in trusting you when in US and now.  You are the one who sin not me.

Give me back my daughter and my money.

You are not a man

October 3, 2017

😫 Exhausted

September 11, 2017

I realize I am alone. I have friends and family in Singapore.  But my daughter is far away in US.

All the while I want to go back to US but my family and friends here dont want me to go back to US though they know my daughter is in US.  Though I tols mg family and friends I will Stay back in Singapore, my heart is with US. My teacher friends told me that they will be here for me when my HD gets worse in the future.  I cannot win them since they are teachers and well spoken then me.

I seldom go out with them.  Unless going out to church with my teacher friend s.  

  •  And recently have issues with my dad but I did not share with them.  He is trying to get life insurance for HD brother who lives in a home now.  On Sunday, he was not home. I went to his home for dinner. 

He gave me a call about a letter from my brother’s two sons.  I expect to find a letter which they have written for him.  I told him I cannot find any letter. But I found a plastic cover for documents and ID card.  I did not open.  He asked again and I said the same thing again to him.  Hr was frustrated with me.  He is also not happy that he has to do it for his son.  He was loud as always.  I told him again no letter but a plastic cover with ID card and documents

He finally said me about the document and ID card.  He told me off. Why didnt you said in the same place.
He knows I have HD, why can’t he get younger sister to look when she is back.  

I am hurt and upset NY him.

He never treat me as having HD.  Or rather my family never bother about us.  Never check about HD especially my brother. No one has the patience with him. 

Toay I told dad I am not going to his home for dinner because I don’t want to see him. I have never been upset with him till recently.  

I am lonely and cannot have anyone from here.  I am crying now. 

August 29, 2017

August 26, 2017

Check out @HDSANW’s Tweet: https://twitter.com/HDSANW/status/898258346477670400?s=09

RNA-Targeting CRISPR-Cas9 Cures Neurological Diseases In Living Cells

August 18, 2017

http://bioscriptionblog.com/2017/08/15/rna-crispr-cas9-cures-neurological/

Today would have been Charlie Gard’s first birthday | Blogs | LifeSite

August 5, 2017

https://www.google.com.sg/amp/s/www.lifesitenews.com/mobile/blogs/today-would-have-been-charlie-gards-first-birthday

Today would have been Charlie Gard’s first birthday | Blogs | LifeSite

August 5, 2017

https://www.google.com.sg/amp/s/www.lifesitenews.com/mobile/blogs/today-would-have-been-charlie-gards-first-birthday

Happy Birthday Charlie! You could have your first ever birthday with your parents.  You will be missed

July 24, 2017