Hawk Posted June 6, 2008 Share Posted June 6, 2008 There was a news story about a little girl that has been diagnosed with NF2. It is a very evil disease. My daughter who had this went through hell for 14 years. The disease eventually took her life at the age of 26. My other daughter and I are going to reach out to this family who is raising money for research, not for themselves. My daughter before her death lived in Culver City, Nevada, where her and her boyfriend Pat, (who also is afflicted by NF), organized conventions for those afflicted and their families. I really am at a lost right now on how to approach them. I have lots of information for them and can also help them understand what is ahead for Leah, but I cant figure out how to do this without scaring them to death. As of now there is no cure, but they think they may have narrowed it down to a protein that is missing from the person afflicted. If anyone of you would like to contribute here is the link: Leah Joy Manth's Fundraising Page News Story Link: Community Rallies Around 8 Year Old Link to comment Share on other sites More sharing options...
blzrul Posted June 8, 2008 Share Posted June 8, 2008 I am so sorry for your loss. We lost our son at age 14 to Type I diabetes. It's devastating to lose a child. I would say that you shouldn't hesitate to approach the family and offer any help you can through the insights you gained. After my son died, I did some research and found that his death was probably caused by a very rare syndrome related to the diabetes. Research was underway ... yet our physician never mentioned it to us. I don't think he knew. Other physicians told me afterwards it was SO rare that mentioning it could panic parents. Yet, had I known about it, a simple baby monitor in his room might have allowed me to hear his distress in the middle of the night. I wouldn't have found him dead in bed the next morning. You can bet I told other parents about it - just in case. Lightening strikes. So don't hesitate - you are offering help. If they reject it, at least they tried. Link to comment Share on other sites More sharing options...
Hawk Posted June 11, 2008 Author Share Posted June 11, 2008 I am so sorry for your loss. We lost our son at age 14 to Type I diabetes. It's devastating to lose a child. I would say that you shouldn't hesitate to approach the family and offer any help you can through the insights you gained. After my son died, I did some research and found that his death was probably caused by a very rare syndrome related to the diabetes. Research was underway ... yet our physician never mentioned it to us. I don't think he knew. Other physicians told me afterwards it was SO rare that mentioning it could panic parents. Yet, had I known about it, a simple baby monitor in his room might have allowed me to hear his distress in the middle of the night. I wouldn't have found him dead in bed the next morning. You can bet I told other parents about it - just in case. Lightening strikes. So don't hesitate - you are offering help. If they reject it, at least they tried. I also am sorry for the loss of your baby. Dont blame yourself for what you could have done, it's not your fault. I struggled with a decision I had to make for 5 years. See a counselor so you can be at peace. I wrote a short story about my experience, it helped me realize that she is in a better place and that I did the right thing. The Decision By: Howard Miller Hi Dad, glad you could come. I'm really bored here. I see you've brought some pictures, I love reminiscing. Ha ha ha, there's the one of me playing T-ball. I really liked that time of my life. I wish you could have gotten to more of my games, but I know you were very busy. This is fun, you’ve really brightened my day. It's hard lying here day after day, not being able to speak or move, but when my family comes to see me, it makes it all better. What's all the commotion? These nurses just won't leave me alone. Hey, Mom and my step mom Cindy is here too. Are we having a party or something? Crap, they are sticking me with needles again, get away!! I hate it here! Got any more pictures, Dad? That was fun. Wow, getting sleepy here. Sure I'm wide awake all night sick, and now that I get company I'm sleepy. Dad's holding my hand now, it feels nice. What's that light? Hey, why are you crying? Oh my. I'm free of that worn out body now. Thank you Dad, You did the right thing. Look there's Grandma. She's waving at me. I think I'm going to go hang out with her for awhile. Maybe she's got pictures. Link to comment Share on other sites More sharing options...
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