My 16 year old son dies from ALS

[suvopa01]

I first wrote in March of 2007 when my son was being tested for ALS. After many doctors and hospital visits he was diagnosed in August 2007 with ALS. Yes, I know it is unheard of that a 16 year old has ALS, but he did. My husband and I took our son too many local doctors, of which some of them specialized in ALS. Last summer we also took him to John Hopkins which also diagnosed him with ALS. I also sent his file to the National Institute of Health and the National Institute of Neurology which also concurred with his diagnoses.

My son passed away on May 6, 2008 about two weeks ago, after being diagnosed only 9 months ago. Every doctor we saw said he was the youngest person they ever saw with ALS. I'm not sure why I am writing now.....maybe because I feel so incredibly empty like a part of me is missing.....a parent should never have to loss a child. I guess I'm sad, angry and upset because I felt so alone in this journey. I mean every time I would ask a question about what to expect, I was told they only had statistics on adults with ALS, I felt I had no one to go too. I'm also so mad at myself because the night Bobby died, I was very short tempered with him and I can't seem to get that out of my head. Just knowing that he will remember his last day with me, as me being *****y. He wanted to be moved and/or repositioned every few minutes but nothing would make him comfortable and after several hours I got aggravated him. I just hope he can forgive me; I loved him so much....he was my sweet pea.

 

[sharonca]

I am so sorry for your loss. I cannot even imagine how you feel - it is just not right to lose a son at such an age for any reason let alone ALS.

There is just no way that he is not looking down on you smiling, loving, and telling you that there is nothing to forgive.

My prayers are with you for peace and rest.

Sharonca

 

[DonnaJ]

I am truly sorry you lost your son to this horrible disease. We as caregivers are human and we do the best we can. I'm positive your son loved you and things happen the way they do for a reason they say. Please, don't beat yourself up. Take that energy and turn it into something else.......picture the pleasant memories and the good parts of life you had with him. He is not suffering now and is happy and whole again. There is no suffering or sorrow where your son is so he doesn't even have that memory with him. It's all good for him, they can't see us beating ourselves up. So forgive yourself dear. You were, I'm sure a wonderful loving mom who was just tired that's all just tired. Time has a way of pulling through. I am so so sorry your son is gone. God bless you and wrap you in his arms.
Donna J
West Virginia

 

[comfortable with ALS]

I am teribbly sorry

I cant even imagine what you are going through right now. I also lost a daughter at 12 days old to trisomy 18- genetic disorder, that is the hardest thing a parent should have to go through. I cant even fathom loosing a child at all especially als. I am so sorry u have to be going through this right now. This disease is to cruel. I will say a prayer for you tonight and you will always be in my thoughts. jenny

 

[brooksea]

I'm so very sorry for your loss. Please know that the people on this forum are thinking of you and your family.

 

[Al]

Pat, I am so sorry for the loss of your son. When you first posted I wondered as you did how a child could be stricken by a disease like this. There are still no answers and I am sure he loved you and appreciated all you did for him.
AL.

 

[trustinggod]

My heart weeps with you

I am so sorry for the terrible loss that you have suffered. My heart is heavy with sorrow
as I imagine all that you feel right now.

Please be gentle with yourself and know, deep in your soul that you did the very best you could as you cared for and loved your son through his battle with ALS. Day to day care for one with ALS is so frustrating and never ending. Add to that the heartbreak
of it being your beloved child. I am so sorry.

I will pray that God will give you peace and comfort for each new day.

Jeanne

 

[olly]

i am so sorry to read about the loss of your son, i can't imagine the pain you are feeling.
it's bad enough having als at any age but 16yrs old is just so wrong.
you are both in my thoughts and prayers.
god bless
caroline

 

[Geo]

God Bless you My Friend . You should not feel bad Only Frustrated . Our Medical Community has sat on their Laurels Too Long and now this problem has gotten out of hand . Im with you in the Frustration of Why ? God hands us challenges everyday ,this is when our Faith comes in . Your Son Loves you So Dont Be Down
God Bless Geo

 

[DeeMichelle]

Oh what to say I do not know. My heart aches for your loss. ALS is so cruel and you've suffered the worst loss possible. People remember how you treat them over a life time and not what you do in a moment- Bobby will know he was your sweet pea and your mothers love comes across loud and clear... Picture all you really did for Bobby and be proud of all you did trying to deal with this. We're all wiped out dealing with ALS from time to time let yourself be human. I'm so sorry for your loss and I pray you find some peace.

Dee

 

[MICHELLE40f]

So Very Sorry

I really feel for you,I will pray for you ,I lost my son to SIDS when he was 5 weeks old,so I know the pain of losing a child,but I cant imagine to als at 16.....sooooo sorry........


{{{{{{{{{{{{{{{{{{{{hugs}}}}}}}}}}}}}}}Michelle

 

[Icanmanz]

Hi suvo! Just read your article, and it drove me to tears. May your "sweet pea" rest in peace. God, 16 years is way, way too young. Let me ask you, a person this young, did he have the same symptoms, and did you see the changes in his appearance as the illness progressed? I am sorry I am being stupid! The reason I am asking is because my son passed from this illness on June 3, 2007. He was 38, 15 days shy of 39. I know the pain you are experiencing. I still miss my son a great deal. I dream of him quite a bit. I pray to God that He gives you comfort. I am so sorry to hear about this. I am totally out of words, all I can say is my heart aches for you. May your baby rest in peace. Did your baby lose his voice? God bless you, dear.

Irma

 

[MtPockets]

There is nothing I can possibly say that will take away the pain of losing your son. Please accept this as a hug from us all during this time. We love you and pray for peace.

 

[crystalkk]

I am so sorry for your lost, I couldn't even image what you are going through...I can't image a 16 yr old kid with this horrible disease. I am lost for words.........you and your family are in my prayers.

 

[kra_zquilter]

Loss of a child

So sorry to hear of the loss of your son, and at 16! Mine was taken at 30 in a fire, so didn't get the chance to know he was going to be leaving. In many ways, that was a blessing. You had to go through that period of time, not knowing when the last time together would be. I know this is easy for all of us to say, but, please, please try not to waste your energy on beating yourself up. Your son is in a beautiful, peaceful place. He has left the cares of this world behind him. When I think of that about my son, that the cares of this world are not affecting him, I can find peace. I hope the day will come when you can, too. But for now, let yourself grieve. The day will come, I promise, when you will be able to bear it. For now, let others, like us on this forum, wrap you in our arms and carry you into a more peaceful place.

I'll keep you in my prayers.

Elaine