My kids will be orphans 😕

Status
Not open for further replies.

Booboo27872

New member
Joined
Jan 18, 2019
Messages
2
Reason
PALS
Country
AU
State
NSW
City
Young
Hi.
I’m 46 with a 9yr old daughter and identical twin boys who are 7yrs old. Their father died in 2016 and I’ve been diagnosed with MND (ALS) jan 2018.
I’m from Australia and my mum passed away November 2018 from MND. I have the gene.
I have 5 siblings. Only one other has had a gene check and she too has the gene.
I’m the youngest MND from my family with my mum, my uncle, my grandmother, my great uncle and my great grandfather dignosed at 58 and died at 63. (Except mum who died at 66yrs and 11mths).
I was a teaching primary principal though I medically retired as soon as I was diagnosed so that I could give my time to my own young children
 
I am very sorry.

Which is your mutation? I have c9. There is very very promising work for c9 and SOD1 is going to have a pivotal trial which is I think meant to lead to approval if successful. Much hope for our families

I look forward to getting to know you. Do you have help with your kids and yourself?
 
I am so sorry. My heart goes out to FALS. Nikki is our resident expert in FALS and trials.

I also have hope for your family. I'm glad you found this forum.
 
I’m sorry to have to welcome you here, but welcome. There are good folks here, and it’s a good site for support and information. I’m so sorry about your situation.
 
I'm so sorry. May you find much support here. Hugs.
 
Welcome Booboo,

This is a wonderful place and you will much support here. I am so very sorry to hear of your situation with your children, how difficult. The good news is you have a little time to plan for where they will go when the time comes. I’d suggest getting whomever is planning on parenting them very involved with their lives now, if they are not already doing so.

I’m sure making that decision hasn’t or won’t be easy, but as we tell everyone here, make sure all your affairs are in order and your wishes are know.

Major hugs
 
Thank you all for your warm welcome. I have the C9ORF72 mutation. I have support for myself through my partner, Keith (56yrs old) though I’ve decided that due to poor relationship with my twins the children will live with a friend and her family. We are in the process of buying another house as an investment until the children need to live with my friend. Then Keith and I will move into that, across the road from my friend’s house. It’s in the same rural town as we currently live. My children don’t know of my diagnosis yet. With them
Seeing my mother deteriate and die from MND they know too well what the path is and with the death of their father they also know what loosing a parent is like. I want to leave it as long as possible though have decided to tell them in the middle of this year. I didn’t want my mother to know of my diagnosis so have kept to close to my circle of family and a few friends for these 12 months.
 
I am glad you have support and plans. I am also glad it sounds like you are progressing quite slowly?

Your doctor may have told you all the following but I will tell you what my doctor and the research doctors have said. My doctor has told me not to worry about kids ( teenagers) in the family. Answers will be there. She is extremely optimistic for my asymptomatic cousins. There is one current trial of anti sense therapy for c9 ( another is in the works). They have finished the first cohort for the current trial with no ill effects. They need to observe those people a bit longer then cohort 2 with a higher dose will happen. They are hoping if it is safe and helpful and higher dose to expand the trial as was done with sod1. They are also planning if they find it helps symptomatic people to do a trial for asymptomatic carriers next.
 
Status
Not open for further replies.
Back
Top