Saturday, June 6, 2009

Cady's 15 minutes of fame?

(If this is your first time visiting Cady's Cause, click here to read about why this blog was created.)

Cady was featured in the local newspapers this week! A wonderful reporter named Meg Fraser spoke to the family last Friday and did a very nice job telling Cady's story.

However, we aren't sure her 15 minutes are up just yet. Lots of exciting things are happening. First off, Channel 6 reporter Julie Ruditzky called the Smith house yesterday expressing interest in doing a story and last week Kelly contacted health-check reporter Barbara Morse-Silva from NBC-10; she wrote back saying she'd like to get something together this month.

There's more, but we aren't ready to share just yet, so let's just say RI legislators are getting involved! Cady could become a part of state history!

Here's the story below, but you can also click here to see it online.

Study offers hope to 2-year-old Cady
by Meg Fraser

When Kelly Smith started chronicling her experiences as the mother of a child with cerebral palsy, she had no idea the connections she was making could potentially change her life.

On parenting message boards and social networking sites like Facebook, Smith – a former Herald reporter and Cranston native – updated her friends about Cadence, who was born with CP due to a knot in the umbilical cord that she tugged on, depriving her of oxygen. Though she is nearly 2 years old now, Cadence cannot walk, talk or sit up on her own and requires constant care, including being fed through a feeding tube.

“Obviously we want more for her,” Smith said.

Several months ago, it seemed Smith’s prayers had been answered when she heard about an experimental study at Duke University that has shown promising results during trials. The procedure involves infusing children with their own cord blood in hopes of regenerating cells and reversing brain damage.

“Brain damage is irreversible is what we’ve always been told,” she said, explaining that what she read dealt her the shock of her life. “I didn’t want to get my hopes up, but what I found amazed me.”

In one trial case, a 3-year-old boy with cerebral palsy saw significant improvements within eight months of the infusion. Smith acted quickly to apply and immediately let her Internet community know about the study.

Within hours she was inundated with questions from around the country, many from people she has never met or has not seen in years. One blast from the past was a former Cranston High School West classmate who, as it turned out, had spent her post-graduate career at Duke. She contacted a professor there who put Smith’s name in the right hands.

What came next was the opportunity the Smith family has waited for – the e-mail accepting Cady as a candidate.

“I was crying. I couldn’t believe it,” Smith said.

She wasn’t celebrating for long. As she learned more of what the procedure entailed, Smith was dealt another blow when a Duke nurse informed her Cady’s participation would cost the family anywhere from $10,000 to $14,000.

“You could have knocked me over with a feather,” she said, explaining that insurance will not pay for any of the costs associated with the trial. “They don’t cover any experimental or investigative drugs or treatments, so that’s out.”

Looking at her daughter last week, though, Smith said she’ll do whatever it takes.

“I believe in my heart that it will help her,” she said.

To help fund the procedure, the Smith family has already set up an account for the cause and is in the beginning stages of organizing several fundraisers. The details have not yet been ironed out, but they are looking at a breakfast and raffle as potential options. Kelly started a blog to keep her supporters in the loop and turned to a source that hasn’t let her down yet – the Internet.

“People I haven’t seen in 16 years have been e-mailing me. All my friends from around the country want to help and it’s unbelievable,” she said.

Help is coming from New York to Nevada and everywhere in between. A message board connection from Nebraska was talking about the story when the woman’s 11-year-old daughter, Emily, chimed in that she was going to run a lemonade stand.

“Especially in this economy, to see how people are coming together to help my daughter is so humbling,” Smith said.

A mother of two other youngsters, 5-year-old Callia and 3-year-old Kiefer, Smith works nights to help support her family and stays home during the day while her husband Corey is at work. She said she is incredibly grateful for the outpouring of support and also for having the chance to help her “Cady bug” today. Banking cord blood costs about $2,000 and was too expensive when the Smiths started having children. When the time came to have Cady, Kelly thought twice.

“Something just told me you need to do this,” she said. “After this is all said and done I fully intend to create a foundation that will grant women who are pregnant with the money to bank their baby’s cord blood.”

Kathy Rubinstein, RN, applauded that decision Friday as she cared for Cadence in the Smith home.

“You only get that chance at birth. For some reason Rhode Island doesn’t promote it so much, but we need to,” she said.

Rubinstein also praised the family for their dedication to caring for Cady.

“These parents deserve gold medals. It’s incredible the sacrifices they make,” she said. “Something like this would be a miracle.”

Cadence needs to be at Duke for observations and tests by July 19, with the procedure taking place on July 21 –the day after her second birthday. Holding her sister’s hand as she reads a book aloud, Callia sounds much older than 5 as she talks about cord blood and why she wants to see Cadence get better.

“It’s going to help her walk and run and talk and play. I can show her things and she could walk by herself,” she said, pausing before adding, “Cadence is a good little sister.”

To read more about the Smith family’s journey, visit Cady's blog at Donations can be made to Friends of Cadence Smith, c/o Greenwood Credit Union, 2669 Post Road, Warwick, R.I. 02886.

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