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Gizmo
10-10-2011, 06:31 PM
We found out today that a 22 year old friend of my 19 year old daughter died on Thursday of complications of the same genetic disorder my daughter has. Lex had many of the same issues that my daughter does, and we were able to meet with her and her family several times. Lex was the first person my daughter ever met with Ehlers Danlos Syndrome and helped her figure out her symptoms when the doctors couldn't.

It is really hitting us hard. I guess we've known for a while that this could be fatal. We're pretty sure my brother also had EDS and he died in his sleep when he was 28. My daughter also has undifferentiated connective tissue disease and adrenal insufficiency - conditions her friend did not suffer from. It's all so scary, and so discouraging. She is virtually house bound with little hope of improvement.

Nonna
10-10-2011, 07:09 PM
I'm so sorry; one of the things I have learned over the years is that we need to take the hand we are dealt and make the best of it. To do anything less would be admitting defeat, sometimes the ones who deal with situations like yours light the world around them with love and hope. I'm sure your daughter and her friend are such people.

Hugs

Saysusie
10-10-2011, 10:22 PM
I am so sorry to hear of the passing of your daughter's friend at such a young age. I can understand your fear and concern regarding your daughter and the health issues that she is dealing with. We have no answers as to how things will affect us or what will be our outcome. For many of us, that is so very frightening.
Your daughter is so very loved by you and her family and I am sure that you would turn the world upside down to help her. Believe me, she knows this and I would bet that this knowledge comforts her and means more to her than the issues of her limitations.
I wish you and her the very best and will keep you both in my thoughts.

Peace and Blessings
Namaste
Saysusie

Gizmo
10-11-2011, 01:44 AM
Thanks Susie and Nonna. I fight for answers for my daughter, almost on a daily basis. Lex had had the surgeries that my daughter has been wanting to have - thinking that they would help her make it to college. This summer Lex did have a huge improvement by having a brain shunt put in, and my daughter was so hopeful. That surgery ultimately contributed to her death, unfortunately. Infections and a pulmonary embolism took her life. Lex wasn't on methotrexate and didn't have an autoimmune disorder, so my daughter's risks would be even higher if she were to have surgery. Two online friends died of complications of Ehlers Danlos syndrome this summer. It's a sad and sobering time for our family, but you can bet I'm going to be out there advocating for the best care for my daughter. Thanks for listening.

tgal
10-11-2011, 06:20 AM
I am so sorry Gizmo. I can't image what ya'll are feeling right now but please know that my thoughts are with you.

busymom3
10-12-2011, 04:45 PM
I am so sorry. My thoughts are with you too.

Coloradan
10-12-2011, 09:55 PM
I'm so sorry Gizmo, that is heartbreaking. I am glad your daughter has such a caring parent though :)

magistramarla
10-17-2011, 06:08 PM
Gizmo,
My thoughts are with you, too. Hang in there and keep fighting. With your help, I'm sure that your daughter will do well, despite the diseases.
Hugs to you both,
Marla

Gizmo
10-17-2011, 06:54 PM
Thanks y'all (Mari I'm feeling like a little twang tonight). I appreciate the well wishes. We found out this week that my daughter had a few abnormalities on her cardiac work up so next stop is the cardiologist. There was another young woman with EDS who died in her sleep this summer - her heart just stopped. She had the same minor abnormalities as my daughter. I'm trying not to borrow trouble, guys, but some days are harder than others.

Mica
10-17-2011, 06:57 PM
I do hope things look up soon, i'm sorry for what you are going through. I hope your daughter at least gets to feeling better for her to experience life and not be house bound. I'm your daughters age and I know how important something like going to college is.