2010 September | Spinal Muscular Atrophy

Archive for September 2010 – Page 2

Celebrating a birthday and fighting SMA

Posted: September 10th, 2010 | By: Staff | No Comments

Friday, September 10th, 2010

Wayne, Carice, and Andrew In her own words, Carice Smith is “one mom fighting for the life of her child and the countless other children and families affected by this disease.” The disease in question is spinal muscular atrophy (SMA). Carice’s son Andrew was diagnosed with SMA when he was less than a year old. Doctors predicted he would not celebrate his 8th birthday.

But, this Saturday, he will mark his 18th!

Already an active advocate heading up FightSMA Mechanicsville, Carice saw an opportunity to celebrate, while also raising awareness and funding for SMA research. She has started an online fundraiser to benefit FightSMA. She is asking for donations of $18 to celebrate each of Andrew’s 18 years, with a goal of raising $1,800.

Click here for more information and to donate online.

From Carice herself:

When Andrew was diagnosed with SMA at 8 months, the Dr.s told us he would be lucky to see his 8th birthday. Here we are today, getting ready to celebrate 18 miraculous years. 18th birthdays are normally a big deal, but to us this is a REALLY big deal, miracle and blessing and one we don’t want to forget!

I have been wanting to celebrate Andrew’s birthday in a special way and after reading a heart-warming story about another little girl living with SMA and how her family will be celebrating her upcoming 36 month birthday, I was inspired! We are so grateful and blessed to be celebrating this milestone of a birthday with Andrew and thanking God for all the family and friends and miracles along the way!

I am one mom fighting for the life of her child and the countless other children and families affected by this disease. I don’t want any other parent to have to count their child’s life in months or face the fear of losing their child. I want a treatment and a cure to be found NOW and I’m asking you to help me!

Would you join me in honoring an amazing young man and a miraculous 18 years with an $18 donation to FightSMA?

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Categories : FightSMA News, Spinal Muscular Atrophy Events, Spinal Muscular Atrophy Families and Friends

A not so typical family

Posted: September 9th, 2010 | By: Staff | No Comments

Thursday, September 9th, 2010

This week PARADE magazine ran an article about the Wiparina family of Centerville, Ohio. Like many parents, Stacy and Rodney Wiparina have two children, a 6 year-old son and 4 year-old daughter. So, what’s special about this seemingly typical family? Stacy has type 2 spinal muscular atrophy (SMA). But this didn’t stopped her from having the family she always knew she wanted.

From the article:

A life-threatening disease couldn’t stop Stacy Wiparina

‘I Always Wanted to Be a Mom’

by Sean Flynn

When Stacy Wiparina told her family seven years ago that she was pregnant, of course they were excited.

“But then I was also kind of scared,” says her mother, Patti Goodman. “Afraid for Stacy getting through a pregnancy, surviving a pregnancy.”

Wiparina is tiny and fragile and always has been. She was born with a genetic disorder called Type II spinal muscular atrophy (SMA). She has never walked–she never even crawled as a baby–and she has used a motorized wheelchair since she was 7, when her arms grew too weak to push a manual chair. Because her bones have never borne weight, they are extremely brittle and easily broken. Her spine is twisted by scoliosis, and her lungs are weak and prone to infections. She spends at least a week each year in the hospital fighting pneumonia, and when she was 22 a respiratory infection kept her in a coma from Christmas until Valentine’s Day. Her doctors expected her to die.

Carry a baby in that body?

“Everyone always worries about me–except me,” Wiparina says. “I just knew things were going to work out.”

Click here to read the full article.

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Categories : Spinal Muscular Atrophy Families and Friends

URGENT ACTION REQUESTED: RALPH HALL (R-TX-4th)

Posted: September 8th, 2010 | By: Staff | No Comments

Wednesday, September 8th, 2010

Attention to families living in Congressman Ralph Hall’s district (Texas’ 4th district): we need your help, and as soon as possible.

If you or someone you know lives in Congressman Hall’s district, please contact Caroline Gibson immediately: carolinegibson@fightsma.com or 804-515-0080. We need Mr. Hall to reach out to other Republicans on committee in support of the SMA Treatment Acceleration Act. This is an important and urgent request!

Thank you in advance for your help. We are nearing the finish line!

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Categories : SMA Treatment Acceleration Act

Has Your Family Had a District Visit?

Posted: September 7th, 2010 | By: Staff | No Comments

Tuesday, September 7th, 2010

SMA families and friends across the country have been hard at work during August recess on behalf of the SMA Treatment Acceleration Act (HR 2149, S 1158). Members of Congress have heard from YOU how important this legislation is, via emails, phone calls, letters, and district visits.

Did your family meet with your Congressman during August recess? We want to hear from you! Please send us recaps and pictures from meetings with your Member of Congress.

Keep up all your hard work. We’ve made great strides this Congress and will continue to work hard until we see this bill become law. Continue to follow-up with your Congressman or Senators’ offices as we turn the final corner for our bill.

Questions? Feel free to call or email Caroline Gibson, Public Affairs Coordinator, at anytime: carolinegibson@fightsma.com, 804-515-0080.

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Categories : SMA Treatment Acceleration Act, Spinal Muscular Atrophy Families and Friends

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