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Diana1215
Living on a prayer!!!
Member since 10/05 29450 total posts
Name:
Diana
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Fundraiser for Baby Sophia at Mulcahys - PLEASE read!
I'm going to try and link the facebook page but if it doesn't work I wanted you all to read what Vinny, Catherine's husband wrote.
The fundraiser is at Mulcahy's on Sunday May 17th. Please pass the info along to anyone you may know!
Thanks!
From Facebook:
“Hi my name is Vincent Gaynor. My beautiful wife Catherine and I had tried unsuccessfully a few times to have a child. But finally on Feb. 27 of 2009 all our prayers and dreams had come true. My wife gave birth to the light of our lives, our precious angel Sophia. She was just a perfect baby she had all her fingers and toes and she was just beautiful. At about 2 weeks we started to notice something was wrong. Sophia wasn't moving as much as we thought she should and it was dismissed by our pediatrician as she was just a lazy baby. By the time 5 weeks came around the Dr suggested we have her tested for a neurological disease called spinal muscular atrophy. After a grueling 2 weeks of waiting the results came back and my daughter tested positive. There are no words to describe the feeling of helplessness we felt. The child that you have waited your whole life for would be taken from you in six months and she could last 2 years if you are extremely lucky. SMA is a degenerative disease that affects 1 in 6000 babies. There is no cure for SMA and there is no proven treatments to help slow the progression of the disease. Slowly my daughters body will begin to fail her. Her body does not produce a particular protein which enables her body to produce muscles. Whatever muscles she has that where produced while in the womb will start to break down. She has a deletion of the survival motor neuron 1 (smn1) gene. Eventually within the first 6 months she will lose her ability to swallow and she will also lose her ability to breath on her own. My beautiful baby girl will never be able to lift her head, sit up, roll over, crawl or walk like any other normal child. The devastation my family has faced cannot possibly be put into words. We just drove from New York to Wisconsin to see the leading sma pulmonologist in the country. The drive took 16 hrs each way but we did not have the option of taking a 2hr flight because the atmospheric pressures could collapse her fragile lungs and she could die in flight. The financial burden has been tremendous on our family. My wife can no longer work because someone has to be around Sophia at all times in case she runs into problems breathing or choking on her own saliva. There is hope in an upcoming clinical trial in California where they are planning to inject motor neurons into the spines of these children to replace the neurons that are dying off. We need help in funding to get this trial going now. This is my daughters only chance. Please help me to believe tomorrow is a better day. Please help me save my daughter.”
Please Note: Feel free to bring your children!
Look forward to seeing you and thank you for your support!
Link to Facebook
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Posted 5/5/09 8:27 PM  |
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Long Island Weddings
Long Island's Largest Bridal Resource |
Samlove
Member since 5/05 4729 total posts
Name:
Shari
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Re: Fundraiser for Baby Sophia at Mulcahys - PLEASE read!
This is so sad. I will do my best to be there for your family
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| Posted 5/5/09 8:37 PM |
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Gertyrae
Peace out Homies!
Member since 5/05 20046 total posts
Name:
Gerty ®
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Re: Fundraiser for Baby Sophia at Mulcahys - PLEASE read!
I wish I could be there...
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| Posted 5/5/09 8:43 PM |
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jlp63
LIF Adolescent
Member since 2/08 871 total posts
Name:
Jenn
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Re: Fundraiser for Baby Sophia at Mulcahys - PLEASE read!
Is there any way to donate even if you can't make it to the fundraiser?
ETA: For anyone that wants to donate, but can't make the fundraiser that day, there is a website where you can donate for Baby Sophia, although I don't think that goes directly to the family:
http://www.sophiascure.com/
Diana - do you know if there is a way to donate directly?
Message edited 5/5/2009 9:16:07 PM.
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| Posted 5/5/09 9:06 PM |
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CellarDweller
LIF Adult
Member since 11/05 1562 total posts
Name:
Jennifer
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Re: Fundraiser for Baby Sophia at Mulcahys - PLEASE read!
Praying hard for a miracle for Sophia!!
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| Posted 5/6/09 1:52 PM |
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sunflowerjesss
Mommy to 3!
Member since 10/05 20369 total posts
Name:
Jesss, duh.
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Re: Fundraiser for Baby Sophia at Mulcahys - PLEASE read!
Posted by jlp63
Diana - do you know if there is a way to donate directly?
I would love to know this as well. I cannot make it to the fundraiser as I have a prior engagement to attend. But I would really like to donate to the family. Every little bit helps.
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| Posted 5/6/09 5:10 PM |
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nov06
LIF Adult
Member since 9/06 1252 total posts
Name:
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Re: Fundraiser for Baby Sophia at Mulcahys - PLEASE read!
Posted by sunflowerjesss
Posted by jlp63
Diana - do you know if there is a way to donate directly?
I would love to know this as well. I cannot make it to the fundraiser as I have a prior engagement to attend. But I would really like to donate to the family. Every little bit helps.
I'd like to know as well!!!
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| Posted 5/6/09 5:35 PM |
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Diana1215
Living on a prayer!!!
Member since 10/05 29450 total posts
Name:
Diana
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Re: Fundraiser for Baby Sophia at Mulcahys - PLEASE read!
In my other post there is a link to donate to Sophia.
And, I am going to start a collection of food and whatnot. I will cross post the link to FHF for anyone interested!
Thanks everyone!
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| Posted 5/6/09 7:41 PM |
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CallaLily
Thank you, Saint Gerard!
Member since 10/07 4937 total posts
Name:
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Re: Fundraiser for Baby Sophia at Mulcahys - PLEASE read!
I want to donate as well. Which link is for donations directly to the family?
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| Posted 5/6/09 8:24 PM |
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pinkandblue
Our family is complete, maybe
Member since 9/05 32436 total posts
Name:
Stephanie
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Re: Fundraiser for Baby Sophia at Mulcahys - PLEASE read!
Diana, maybe a paypal like for donations directly to the family will be an option too
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| Posted 5/7/09 12:15 PM |
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lulugrrl
My 3 Blessings
Member since 3/06 6551 total posts
Name:
L
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Re: Fundraiser for Baby Sophia at Mulcahys - PLEASE read!
I hope I can make it to the fundraiser...I have already donated, but I hope to be able to do a little with each paycheck...this family deserves all we can give
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| Posted 5/7/09 9:07 PM |
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MommyAgain
lovemygermies
Member since 6/08 3195 total posts
Name:
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Re: Fundraiser for Baby Sophia at Mulcahys - PLEASE read!
I just want to add that the money that is sent through the site, IS in fact going there in Sophias name..so the family will benefit from this because it will go to help funding this trial that WILL save Sophias life
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| Posted 5/15/09 10:56 PM |
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