Resources
Medical Reference:
NLB – http://ghr.nlm.nih.gov/condition/long-chain-3-hydroxyacyl-coa-dehydrogenase-deficiency
Family Support:
Fod Support (make sure you sign up for the discussion group here so you can talk with other LCHAD families) - http://www.fodsupport.org/
People with LCHAD
Zack & Abby (My Children) – http://www.lchad.com
Adam – http://www.adamslchad.com/
Additional Family Stories – http://www.fodsupport.org/family_stories.htm
Our son Doug is a sophomore in a high school. He is a strong, active LCHAD teenager. He has struggles but overall does quiet well. He plays football and earned his varsity letter in wrestling this year. As a 9th grade he placed 4th in the state of Utah in junior high state wrestling and captained their national youth football title team. I do not tell u this to brag but rather because as a coach I was devastated when I was told my son would never play sports, etc. We decided at a young age we would allow Doug to live HIS life and set aside our fears. I am glad we did so and we all understand the risks, but he is living, not just existing.
Hope to hear from you.
Hi Doug,
Sorry it took so long to reply. My daughter Abby was born in February with LCHAD so things as you can imagine have been busy! It is so great to hear from other familes affected by LCHAD especially those with older children. It is very encouraging to hear that if managed LCHAD is just another life obstacle you have to deal with and adapt to.
We are taking a similar approach with our children. We are not letting LCHAD define our children. LCHAD is an ever present fact but we want them to live their lives just like any other child.
If you’d ever like to do a write up of Doug’s story let me know. I’d love to post it to share with other familes.