I am devastated to write that Sammie and I have lost a dear friend.
We first met Emma just over a year ago at Fletcher Allen Health Care in Vermont. Sammie's geneticist had called me to inform me that there was another 1p36 diagnosis..Sammie wasn't the only one anymore. I was saddened to hear of another diagnosis but happy to hear there was another family so close by.
Kate and I hit it off right away! We spent hours together over the last year at the hospital. I called every time we went for appointments and her an Emma would meet us in the Cafeteria when we were done or had a break between appointments. Kate pretty much planned most of the 2nd Annual 1p36 Conference in Boston and started the Vermont non-profit organization so we could raise funds for the non-profit for the conference. She did all this while being a single mom to her beautiful Emma...she was a wonderful mother..a passionate mother. I can't believe her loss.
Every time I look at my Sammie I see Emma's little face in him. I know they would have been great friends. I keep hugging and kissing him..reminding myself that our time here is short and we just don't know what can happen.
I ask that you please send your thoughts and prayers to Kate and her family during this devastating time. Please keep little Emma in your prayers as well.
7 comments:
I haven't yet met or corresponded with Kate but please let her know we are thinking about her and her sweet Emma. Thank you for posting her address on the board and for keeping us informed. Kate is an amazing mother and we so appreciate all of her hard work and dedication with the 1P36 group. Our hearts go out to her.
I too find this death so much more real since we knew Emma and Kate (not as well as you did but still). I can't imagine how hard this is for you since Kate was such a huge support for you and Sammie. I find it's such a difficult and complicated grief since it brings up fear for my own child. I am keeping Kate in my thoughts. I can't imagine what she is going through. THank you for letting us know.
Do 1p36 children tend to die at a young age? If so, why?
Curious..
I can't really answer that question. People don't die of 1p36 Deletion Syndrome. However, most of our kiddos are medically involved because of the deletion. For example, my Sammie's cardiomyopathy is secondary to the 1p36 Deletion Syndrome. If he didn't have the deletion then he wouldn't be a cardiac patient.
People with the deletion can live a long, healthy life. Some people have many serious health issues while others have little to no major health issues. No two deletions are the exact same and what is missing in the deletion for information is hard to determine.
So my answer is there is no answer. My advice is..if you have children..special needs, typical, whatever..you should love them and hug them everyday. Our time here is short and you should take advantage of every loving moment.
Well said :)
I am dating a woman who has a son with 1p36. He is the coolest kid ever, but really far behind where a "normal" child his age should be. I've been doing a lot of reading on the syndrome over the past few monyhs and I'm interested in helping my gf find better ways of helping her son along. I'm afraid to insult her though. She really is doing a wonderful job, But I know there is alot more available out there for her son. I guess I'm just asking if you would take offense if your husband/partner said, "Hey, I heard and learned about this... It will help your son to walk faster, talk, etc." the only reason I ask is because I am not the boys parent and I don't want her to think she isn't doing enough. It's really a touchy subject for most folks that have kids with special needs. So yeah, any advice?
Anonymous,
Kudos to you for wanting to help and be involved.
My personal feeling is I want to hear everyones opinion about what may or may not help my son. I want everyone to know about 1p36 Deletion Syndrome..the more people who know the better the world may be for my Sammie.
Does the little guy get services? Early intervention is different state to state but it's a parent driven program. Those services should role over into school if he's school aged. My Sammie gets Physical therapy 2 times a week, Speech Therapy 4 times a week, Occupational Therapy 1 time a week, and Special Instruction 2 times a week. I carry that over everyday..as much as I can =) We are always working on crawling, walking, talking, playing, eating, drinking from a cup..all the daily life things.
I have done a lot of research on ways to help my Sammie. I'm always looking for new treatments, therapies or advice. I think people tend to think that parents of kids with special needs don't want advice. My son's special needs are not a touchy subject to me. I can tell when people are treading lightly because they don't want to offend me. The truth is I can't be offended. I also realize what it's like to be a parent of a kid with special needs and peoples intentions are good. I'm sure that your girlfriend cares about you and would be happy to know that you have taken an interest in her and her son's life. Parents with children with special needs need all the support they can get. Its not easy and we tend to lead pretty busy lives. I'm sure if you suggest something she will be happy to listen. Especially if it's something that could potentially help her son. Anything that improves his life, improves hers!
Also wanted to tell you about the 1p36 yahoo group. I found it when my son was diagnosed. It's a group created by parents of children with the syndrome. They are wonderful and have tons and tons of advice and answers! I highly recommend she become a part of the group. Its private so she would have to sign up. We have a conference every year. It's in Indianapolis this year..last weekend in July. It's a wonderful experience!
Hope this helps..feel free to ask anything. I could talk about my Sammie all day!
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