Lisa burke's Comments

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At 3:04pm on March 20, 2009, Dina said…
Nicholas is a very happy boy. We just told him this year that he has Muscular dystrophy. His school had a fundraiser in honor of him. Don't worry, you will have an amazing time being a parent. Nicholas was not diagnosed til age 6. If it wasn't for the school I would of thought he was just a slow developer. Enjoy every moment with your child. By the way, your son is beautiful. Obstacles may come your way, but you can get through them. Trust me I have been there too. Talk to you soon!
Take Care,
Dina
At 8:15am on March 20, 2009, Dina said…
Lisa,
Feel free to ask me anything! My son is a great student! He has been mainstreamed into all regular classes. He is still in the special ed. category for his physical therapy. I believe that he has to be in it because of that. I think because we moved a lot when he was in kindergarden, that this led to being put in the iep program. I feel that he probally didn't need to be in it because he is a smart boy. He just needed to feel comfortable. By the way, because of the iep we probally would not of found out he had md. They did a physical evaluation that led me to get Nick tested. As far as the deletion, I never heard of mental retardation affecting this particular deletion. Just know that ever child is different. Don't think everything that you read on this site will affect your child. I learned this the hard way. You can become consumed by all of the information. Sorry this comment is so long. Hope I helped a little.
Take Care,
Dina
At 4:31pm on February 11, 2009, Johanna said…
Hi Lisa
It's lovely to finally see a photo of Seth, what a smasher !!!!!
You know we are all here for you and I hope the support locally comes through soon
Speak soon xxx
At 6:13am on February 11, 2009, anne said…
hi lisa... how you doing today? x
your son is beautiful x
my son was diagnosed age five and a half... to the day!
i'm not a carrier.... had never heard of dmd
i have 3 other children, two girls and a boy.... all older and 'clear' of dmd (they are 20, 19, 16 and fred's 10)

i have spoken to my OH about new born screening. he feels it would have been better for us; we would have been more understanding of fred's physical abilities... one day he'd climb the stairs, another he'd sit and scream.... i shudder when i think of how i shouted at him. you'd think i'd have known better.. three other kids, but i didn't, each one had shown similar traits of 'laziness' at times and were ok...
i laugh now at my feelings of when he was 8 months old and the health visitor thought he had one leg longer than the other.. i was devastated.. turned out to be stretchy ligaments! legs were fine!
i'm not sure now, hearing how things have panned out for you if new born screening is a good thing... but i'd have had the tests if offered, why not? i am angry and discusted that there is no follow up support... it's no better futher down the line; but if they are prepared to do the tests they should be prepared for the support required
there are no words to cure all.... if there were we'd all be saying them to you x all i can say is little seth loves you unconditionally and completely... he always will.... even when he's a terrible '2' or a teenager and 'testing' you!

when you read through the forums you will see you have a very special little boy... who'll cope with more than you thought possible... even when you're not

i hope you find the support locally than you need.... and you know we're all here for you x

thinking of you and your family
anne x
At 3:24pm on February 10, 2009, Jennifer Shumsky said…
Thanks for "friending" me. I agree with Sharyn that my heart aches that with your sweet little Seth diagnosed so young you miss out on that time to naively enjoy him, but I will say, it will also save you from all the time I look back that I wasted worrying about things that just didn't matter when my son was a baby. Am I spoiling him by holding him? Did he nap long enough? etc.. you have been given the gift we all have been given...the ability to enjoy your son, every second of him (and with that face I would be all over him) and feel no guilt for holding him extra long and giving him the world.
I hope your husband is hanging in there also. It's hard on Daddy, especially these things they can't fix. My husband is always willing to reach out to other dads, he is just not as active on here. Let me know and God Bless!
At 3:02pm on February 10, 2009, Ofelia Marin said…
Hi Lisa,

Your baby boy is so beautiful! My son was diagnosed through newborn screening too. I don't have family history and I am not a carrier. I know how you are feeling right now. It gets kind of easier in time. My son is 16 months old now. Please send me a friend invite and we'll keep in touch.

Take care,
Ofelia
At 2:50pm on February 10, 2009, Emma Jerred said…
Hi Lisa

Found you here too ;o) Love the picture of Seth on your profile, he looks gorgeous. Hope you doing ok hun....still worried about you but glad you have joined this site too.

Take care of yourselves. Will send a private email on FB tomoz, but around if you need to let off a bit of steam.

Lots of love Em xxx
At 3:40am on February 10, 2009, Sharyn Thompson said…
Hi Lisa,

Welcome to PPMD. YOur little boy is just beautiful, and I love his name. Did you recently write on another website about your son recently being diagnosed? If so, I saw it and I am so sorry to hear about his recent diagnosis. Our son was diagnosed at 2 and it was so hard then, I can only imagine it must be worse having Seth diagnosed so very early and not being able to (naively) enjoy a couple of years without these sorts of worries. However, there are positives (if you can call it that) to come out of this. SInce he is diagnosed so early, you can start intervention NOW. Your son has a headstart in treatment compared to most other boys, so you need to remind you of that to be part of your silver lining.

I am mum to 3 kids, with another on the way. James is 4 and was diagnosed on September 1, 2006 at 1pm (funny how we remember the date so vividly). I also have two other gorgeous girls - Charlyse is 3 and Saraya will be one at the end of this month. I also have another baby due in August. I had a CVS done last week to see if this baby will have DMD and will get my results by friday.

We have recently (in November) moved to England after 4 years in SIngapore and 4 years in Tokyo, Japan. In fact, my son was born in Tokyo and my daughters were born in Singapore. This baby will be British (I have a british passport). We originiate from Australia and hope to return there in the next few years.

Why don't you come over to the UK Families group and join us. The mums there have been fantastic and I am now friends with them on Facebook. We are trying to organise get-togethers so we can continue to provide support to each other. You will find much support amongst these girls, especially since they are "local" to you.

Lisa, I hope you find some solace and answers and support coming onto this site. We are all here for you, any time of the day or night. My number is 07595980090, so if you EVER need to talk or just have a cry, feel free to call me.

Sharyn.
At 9:49pm on February 9, 2009, Jennifer Shumsky said…
I just wanted to welcome you. Sorry you had to find your way here. Your son is just BEAUTIFUL!!! I could just kiss him all day!!!! At this point in the diagnosis, all you have to do is just spoil him with all the kisses and holding you can do in a day. And of course post more pictures of him for all of us to admire. Hang in there!

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