Brisan and Parker on Couch

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Comment by Michael G. Stults on November 5, 2009 at 12:41am

Karen,

This is graciously kind of you. I will speak with you soon! I will send an email over.

Michael

Comment by Karen Maskall on November 4, 2009 at 2:15pm

Hi Michael
You have all the support that you need unconditionally I assure you. Of course our "Share Program" is very new but we all have every faith that it will take off very soon and in very good style to help everybody.

There are goals that we can set to help cover the medical insurances which I can hardly believe the cost of. I can't even begin to imagine what you are going through having to worry about finding money like this on top of everything else.

The day I set this program up on Pledging for change I had a vision of helping lots and lots of people,charities and so on. Buy now I realise that this dream was only the beginning.Pledging for Change members are something really special. And everyday our lives are being touched by the relationships that we are forming,especially with many people like yourself in great need.

And the greatest blessing of all is that we can all work together and make things happen.

For the program I would be honoured to help you on a 1-2 1 basis. And I know Pamela will be available for support too. So if you want me to add you to the program manually please just email me on here and I will go ahead and set things up for you and we can take things from there.
For now my prayers and love to you and your family.

Karen
(founder)

Comment by Michael G. Stults on November 4, 2009 at 1:30am

Thank you Pamela. Thank you Tracy. I agree everything is for a reason. There is a plan laid out and a path that is meant to do bigger things than can be described. All we can do is love them and spread the word.

I have seen the Share Program. I might need a little coaching on getting it set up but I do have intentions of applying the avenue.

I appreciate the replies. :)

Mike

Comment by Diamond on November 3, 2009 at 3:10pm

Oh they are so beautiful. And you are so very very wonderful helping others despite these challenges sent your way.
I have no idea why these things happen... but they say its all for a reason. Sometimes we find it difficult to find that reason I know.

I am lost for words... I really am and my heart and love goes your way sincerely.

I have joined the "Share Program" on Pledging for Change too... and I know sometimes we think these things can't help us but I believe in this it can...and it's for sharing with everybody in need. I'm not going to post my link as that seem inapproprite I feel, as the choice is yours and your alone if you choose to check it out. And I know that you will be led to the right link for you... sort of guided there by unknown forces I think I'm trying to say.

Bless you all... lots of love Tracy

Comment by Pamela Ostrom on November 2, 2009 at 6:04pm

Your boys are darling, Michael! And your heartbreak must be beyond anything I can imagine. To say that I am sorry seems...insignificant compared to what your family is going through. I see that you are willing to make this experience into a way to help others, thank you for having the strength and courage to do that.

In the spirit of wanting to help...may I ask if you've joined the Share Program here on PfC? I saw on your website that you are seeking to raise funds for research and the SP would be another way to do that. I'm sure Karen would be happy to help you promote the program on your site/blog. I am now following you on Twitter so I'd be very willing to help you too.

Thank you for sharing this deeply personal experience with the world. Many will benefit in miraculous ways as a result. Bless you and your family.
Pamela

Comment by Mamita Bhattacharjee on November 2, 2009 at 8:49am

Ohh I am so sorry.May GOD bless them :)

Comment by Michael G. Stults on October 30, 2009 at 3:41pm

That is a great question. Brisan and Parker our my two eldest sons. They have a fatal neurological disease called Niemann-Pick Type C. A symptom of this fatal disease is what they call Supernuculer Gaze Palsy. Basically the the inability to move the eyes up and down. The disease attacks the nervous system of your body. So with that said he just doesn't always like looking up if he really does have to. :)

You can learn more about the lil dudes here: www.BriParDun.com & www.Blog.BriParDun.com

Comment by Mamita Bhattacharjee on October 30, 2009 at 6:56am

Why dont you get a smile on camera anymore for Brisan ?

Comment by Michael G. Stults on October 29, 2009 at 1:38pm

Thanks! They are my two oldest sons, Parker on the left and Brisan on the right. This picture was taken in Aug. 08'. We don't normally get a smile on camera anymore for Brisan so it is a pretty iconic picture!

Comment by Mamita Bhattacharjee on October 29, 2009 at 7:22am

so cute kids, who are they ?