Granddaughter diagnosed with deadly genetic disease

[marlena]

Hi, everyone. It's been ages since I've been on here. I'm in a very bad place right now and need your help. My 14 month old granddaughter was recently diagnosed with MPS1 or Hurler syndrome. She lacks an enzyme that breaks down the body's complex sugar molecules. In time they collect and destroy all her organds including the brain. There is no cure. Just treatment. She is having weekly infusions of the enzyme she is missing and we are waiting for a match for a bone marrow transplant. This has to be done before she's two. She's 14 months now. To say I am devastated is a gross understatement. I am losing my mind over this. At times my despair leads down very dark paths. I am worried out od my wits both for my daughter and my beautiful granddaughter. How do I come to terms with this? How do I accept such a hard future for the both of them. Even if the transplant is a success, she will continue to have all sorts of serious medical problems, mostly surgeries,  all her life which in the best of circumstances will  be contunue into her early adulthood. I think I am going insane. I am not who I used to be nor is my life what it used to be. I guess what I'm asking Q HOW DO I COPE WITH ALL THIS?  

[ShyViolet]

So sorry that you're going through this.  I can tell you what has helped me as someone who received a serious health diagnosis myself this year.  I got connected to an organization that offers support groups, and I've been doing a support group that meets weekly via zoom.  Find a support group that is geared towards situations similar to yours; not necessarily the exact condition that your granddaughter has, but maybe for family members and caregivers of children with serious illnesses.  There are also facebook groups about different health conditions where you can connect with other people.  Of course there's always individual therapy as well.  But I find that talking to other people going through similar situations is the most helpful.