How do you live knowing your child has an incurable disease?

Katherine - posted on 04/08/2012 ( 4 moms have responded )

4

0

0

My son is 6. Last school year he played fall soccer on the 4/5 year old team, basketball during the winter, and back to soccer in the spring. The season ended in May and by July we were seeing every doctor we could think of to try and find out what was wrong. He quit running, he quit using his arms and hands. He couldn't walk with out someone holding his hands. By August he was in a wheelchair. In October he was diagnosed with late onset mitochondrial disease. In December 2011 he was clinically diagnosed with late onset Leighs disease. We were given a prognosis of 2-20 years for our child to live and told that there is no cure. I can't sleep at night because I can't stop crying. I don't like to cry in front of him. I'm tired of hearing just take it one day at a time. I want to make everything better for him and I can't.

If you see this, leave this form field blank.
Powered by RESPECT not THUMPS

4 Comments

View replies by

Brenda - posted on 01/16/2013

1

0

0

Katherine,

My son was diagnosed with a mitochondrial disorder called Friedreich's Ataxia, also a progressive order with no cure. We noticed something was wrong when he was 8 and it took several years to get the correct diagnosis. He is now 22 years old. His progression has put him in a wheelchair full time, his speech is affected and his hand coordination has deteriorated. It's been extremely hard but he has lived an incredible life and has gone to college, lived in the dorm, moved to a house (we made it as accessible as possible) with friends, is the Editor in Chief of his college paper. He is LIVING his life to the fullest.

Don't get me wrong, he has his days, and we have ours and it is HARD not to think about the enormity of everything but the fact is, all we have is today. It took me a long time to wrap my brain around that and I got so sick of hearing that adage, "all we have is today" - but it's true. If my son can live each and every day with the courage to "do", then I have to. Doesn't mean I don't have those moments, but by the Grace of God, I push through.

Family, friends, my son's friends, my community and therapy have brought us along and I'm grateful for every moment we have. Help him to live his life to the fullest and you will find such comfort in that!

Katherine - posted on 04/09/2012

4

0

0

Louise

I am glad that you got a second opinion and that your son is happy and healthy. It is these types of stories that give me hope.

Katherine - posted on 04/09/2012

4

0

0

Curt and I are lucky. We have a wonderful support system. My family lives close by and I have a wonderful church. There are no support groups in my area for mito disease. The doctor advised me to look online for support and suggested this website and one other. We had a good Easter and went to one Easter egg hunt. We also had several for him at the house. I am trying to keep everything as normal as possible. He can't play sports, but we did figure out how to play miniature golf in a wheelchair. When he is not around or when he is asleep is when I get upset and really need someone to talk to. My preacher and my therapist both said I would have to go through the grieving process when receiving news that I did and if it really happens I will have to go through it again. I also believe that the doctor doesn't have the final say and maybe someone will come up with a cure.

Louise - posted on 04/09/2012

5,429

69

2296

Katherine you are gong to have to find the strength to make your sons life as full as you can and try and put your feelings to one side. I have had a taste of what you are going through as my beautiful 2 year old son was born with a sunken chest although healthy. We saw a consultant that matter of factly told us he would be dead before he was 10 because his chest would push against his heart as he grew. i was devastated and could not do enough for him. I wrapped him up in cotton wool and smothered him. I cried all the time. It wasnt until we moved counties and came under another hospital that we were told this was not the case and that he would lead a normal life.



Sadly this is not the case for you. All I can say is pack as much as you can into your day. Make memories together and try and and stay happy for your son. You have to live one day at a time, the good with the bad. As your doctor has told you, your son may live for another 15 years. You have to show him some normality and let him do things his friends do as best you can. If you are really struggling find a support group to go to. Your doctors will be able to help you here.



There are lots of mothers facing what you are. You have to come to terms with what you can do and not what you cant. You can give him a good life, love him, and share memories with him and always be there for him.

If you see this, leave this form field blank.
Powered by RESPECT not THUMPS

Join Circle of Moms

Sign up for Circle of Moms and be a part of this community! Membership is just one click away.

Join Circle of Moms