Rudie thoughts and prayers desperately needed

[Agnes]

This afternoon, after 10 days of testing blood, body functions, an MRI and EEG, my 16 month old nephew has been diagnosed with infantile Tay-Sachs disease, a lysosomal storage disease that manifests itself in the brain. There is no cure and my nephew will most likely not live beyond 4 or 5 years, if he makes it that long. His symptoms are so severe that even that is unlikely.

My brother and sister-in-law are living their personal hell. Any good thoughts, vibes and prayers would be greatly appreciated.



I can't see what I'm typing anymore, so if you want to know what Tay-Sachs is, just look it up at http://www.answers.com/topic/tay-sachs-disease?cat=health

[corolla girl]

Agnes,
Rudie Vibes and prayers coming your way to you and your family....Hugs, corolla girl.....

[Mimi]

Dear Agnes,

I'm so sorry to hear about this. You and your family are in my thoughts and prayers.

Hugs, Mimi

[Agnes]

Thanks girls, I appreciate it.

[Marcia Drummergal]

So very sorry for this news Agnes. Keeping you and your family in my thoughts and prayers.

Marcia :(

[RedjackRyan]

>>>HUGGG<<< you know my love, sympathy, and good will are with you and your family. If you need a shoulder..

[Rickster]

Agnes, Prayers coming your way for your nephew and family! God Bless!

[Roady]

I'm so sorry Agnes to hear about your nephew Agnes. :( Sending positive thoughts to you and your family as you travel the difficult road ahead.

[KarenSews2]

I am so sorry to hear that. Good and positive thoughts coming your way.

[aabram]

Can't leave you alone for 5 seconds, can I!!!! I go away for a few hours and THIS happens :D How terrible, Agnes. No words can say how badly I feel about this. Your poor nephew, brother and sister-in-law. Heartfelt thoughts and prayers from Scotland on their way to you and your family

[Agnes]

Thanks for the support, guys. Been on the phone for most of the evening, trying to keep the rest of the family on their feet. Everyone is devastated. We have four birthdays in our family this weekend.. Going to be a gloomy occasion.

[Oak Kitten]

Agnes,

I am very sorry to hear this. I wish you and your family the strength and resilience to cope with this difficult situation.

Oak

[Dee]

Infantile Tay-Sachs is a heart breaking disease and I pray for strength for you and your family, Agnes.

[hoops]

all good tyohoughts and prayers for your nephew and his family, and for you dear friend. this is something that just shouldn't be and yet somehow it is. it doesn't make any sense. i hope that you and your family can find some kind of joy in the time remaining. much love to all of you
peace
Noel

[marjan]

That is terrific news Agnes, sorry to read this. My thoughts will be with you and your family. Please keep your wonderful positive way of thinking yourself, I'm sure that for itself will help a lot!

[Eva]

Oh Agnes... I am so sorry that your nephew, his parents, you and the rest of the family have to go through this. If you need a shoulder to cry on, a hug, someone to shout at in rage... you know where to find me. I will contact you soon.

Sending strength,

Eva

[DaveM]

I am so sorry, Agnes. My thoughts are with you and Rudie Power is headed you way. This is one of those situations which leaves one wishing one could somehow offer more.

[BeckyVA]

Agnes,
my heart breaks for the little one. I know your nephews parents must be living a heatache one cannot measure. Know that you and yours are in and will remain in my prayers. If there is anything at all I can do, please let me know. Love is your greatest gift to one another right now; share it as often as you can and preserve each gathering...let this weekend be a gift of love when your family gathers...none of us ever knows the pains or struggles we will face; our gift to you is you don't have to face it alone. ((Hugs)) to you and please let us know your needs at this difficult time. Positive energy coming your way...love to all your family that you can get through this one day at a time.
Becky

[SongDragon]

I'm so sorry, Agnes. You and your family have my prayers and thoughts. Many hugs to you, and all the strength in the world to you.

~SongDragon

[Elliott]

I'm so sorry to hear this news. My thoughts and prayers go to you and yours.

[Darlene]

So sorry to hear about you nephew. It must very hard for your family to go through such a painful situation. May you all give him as much love as possible during his short time on this earth. Rudie Vibes and ((Hugs)) to you and your family.
Peace, Darlene

[Jan de Vries]

Reading the MB just now gave me a shock. Agnes, my thoughts are with you and your family.

Jan.

[david uk]

great big hugs and strong rudie vibes to you and everyone in your family, Agnes.

david xxx

[sister rose]

I am so sorry, Agnes. My best to your nephew and his family...and to you as well!

[Denise]

Bing a mom, I can't imagine the personal hell they are going through with your sweet nephew... my prayers for you and all of them....

[saxman]

im sending my prayers and good vibes your way .

[Agnes]

Thanks, all of you. For the good thoughts and positive vibes and for letting me rant.

My brother has had a long conversation with the specialist and he's been very honest with him. Considering my nephew's abilities, the vast amount of damage in his brain and the rather rapid decline, it's far from impossible that the little fellow won't see his second birthday.
Hard as it may seem to say so, maybe just as well.. It's terrible to see him 'jump' on every single sound (even his own swallowing), not being able to hold his head up, his sight is a mere 10%... In a while, he won't be able to swallow any more, because he will gradually lose control over his muscles and the lysosome will slowly poison his brain and organs. We don't know whether he'll be in pain or not. If all goes well (everything is relative), he'll come home tomorrow and they can give him the liquid food (don't know the medical term in English) themselves.
But there's still a very rough road ahead...

[Ginny]

Agnes, your family is in a heartbreaking situation. I will pray for your nephew and your family. - Ginny

[stardust]

Agnes, I am so sorry. Sending lots and love and energy your way. I'm sure his life will bless the lives of all those around him, in ways no one can yet imagine.