Baby Sophia

Our Story:

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 February 27th 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 that she was just a lazy baby.


By the time 5 weeks came around the doctor 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 are no proven treatments to help slow the progression of the disease.

Slowly my daughter’s 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 were produced while in the womb will start to break down.
Sophia and Catherine
Sophia and Vincent

Sophia 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. In April, we 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 the baby’s 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 daughter’s only chance. Please help me to believe tomorrow is a better day. Please help me save my daughter.

Sincerely,
Vincent Gaynor

You can help by making a donation in Sophia’s honor.
 

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