Even though spinal muscular atrophy (SMA) is the number one genetic killer of children under the age of two and is estimated to occur in 1 in 6000 births, all too often parents tell of a long and stressful path to their child’s SMA diagnosis. Many times this is simply due to a physicians inexperience with SMA and so the signs of the disease are not immediately recognized. But, the story of the Hoskins family of Greencastle, Indiana seems particularly burdensome. It involves ignored symptoms, lost medical tests, a misdiagnosis, and months of unnecessary intravenous treatment.

Thankfully, Zion Hoskins, just short of his second birthday, is doing well. His mom, Chelsea said, “It’s hard to watch him struggle. He’ll fall over, but he gets back up and keeps trying.” Even though Zion’s parents know that the future will likely include feeding tubes, breathing machines, and wheelchairs, they are optimistic that their son will have the opportunity to enjoy many of the same experiences as his peers. “It’ll be interesting to see how things progress,” Paul, Zion’s father, said. “I like to think Zion is going to prove all the doctors wrong.”

Read their story by clicking here.

Christopher Finlan, the author who used his debut novel “Not a Fire Exit” to raise funds and awareness of spinal muscular atrophy (SMA), is preparing a new project focused on families affected by the disease. With the support of Milverstead Publishing, he is asking families to share their personal stories and experiences with SMA to create a paperback book “for people to read for generations to come.” In addition, profits from sale of the book will be distributed to SMA organizations.

Click here to learn all the details of how to get involved.

Satori Lewis is like a lot of girls her age, with one major difference: she has spinal muscular atrophy (SMA) type 2, the intermediate form of the genetic, neuromuscular disease. Because the muscle weakness caused by SMA, Satori has developed scoliosis and will soon be heading to California for spinal surgery. As her mother Melissa describes it, “they will open her back from the neck all the way down, insert 2 titanium rods, one on either side of her spine, wire the whole thing up and place donor bone in between all the vertebrae. Eventually it will all grow together “fusing” her spine into one long bone.”

After the surgery, Satori will have remain in the hospital for 7-10 days, but her mom has a plan to try to help that time pass better. Melissa has put out a request for postcards from around the US and the world to be delivered during her daughter’s hospital stay. The plan is to surprise this straight-A student with a new atlas where she can track where all the postcards originate. The hope is that Satori will get two things out of this: global well-wishes and a geography lesson.

For information about how you can send a postcard to Satori, click here.

At only 12 years old, Erinne Williams is already an inspiration to a lot of people. She was diagnosed with spinal muscular atrophy (SMA) at 14 months of age and doctors predicted she wouldn’t live beyond her 8th birthday. Because of SMA, Erinne has endured more than most of her peers, including multiple hospitalizations and surgeries. While the wheelchair she depends on is plainly visible, the metal rods in her back that help to counteract scoliosis are not. In addition, Erinne depends on a ventilator to help her breathe and a feeding tube to help her eat. But, despite having a disease that progressively weakens her muscles and she knows will some day take her life, today, Erinne is a seventh grader who enjoys playing wheelchair sports like hockey, soccer, and baseball.

Erinne has made such an impact on her community, that it has even rallied around her and her family - literally. A pep rally was help at Erinne’s school as part of an attempt to convince the producers of the tv show “Extreme Makeover: Home Edition” to help Williams family obtain a wheelchair accessible house. The application to the show is pending.

To read more about Erinne, click here or here.

To see footage about Erinne, click here.

Mike Bush, news anchor for KSDK’s NewsChannel 5 in St. Louis, did a piece about a recent show at the Touhill Peforming Arts Center at the University of Missouri-St. Louis. But, being a musical version of a classic Mark Twain novel is not what made “The Adventures of Tom Sawyer, the Musical” extraordinary. This show was put on by the Variety Children’s Theater which provides children and teens with disabilities the opportunity to work alongside professionals in all parts of the production, including on-stage performance, costume design, set design, stage management, etc.

One of the children spotlighted in Bush’s report is Kaci Conley, a ten year old with spinal muscular atrophy (SMA). When she was born, Kaci’s parents were told she wouldn’t even speak. Through hard work she has proved the prediction wrong, winning the role of Penny Temple in the musical and singing and dancing with all the other actors.

To read the full article or watch the video of the news report, click here.

Jeff Horton is a Dad.  But he’s not just any Dad — he’s a Fighter Dad.  After his daughter, Evie, was diagnosed with Spinal Muscular Atrophy (SMA), Jeff became proactive in getting the word out about the disease.  SMA, as you might know, is the number-one inherited killer of children under the age of two.

In April 2009, Jeff attended his first FightSMA Annual Conference in Washington, DC, and participated in the annual Capitol Hill Day.  You can see him to the right with Congressman Gregg Harper of Jeff’s home state of Mississippi.  In preparation, Jeff did some work “in the field” back home in order to gain the support of his Members of Congress.  He had one goal: to get all of his Members to sign on as cosponsors for the SMA Treatment Acceleration Act.

Jeff agreed to share his experience with FightSMA and our blog readers.

…Click here to read more.

Gail Hatchard probably didn’t expect to have a hit song on her hands, but at least in one part of Canada … she does. A story this week in the Chronicle Herald of Nova Scotia tells of how Ms. Hatchard penned a poem one night about her granddaughter, Katie, who has spinal muscular atrophy. She took it to her friend, Janice Sheridan, who put it to music. Ms. Sheridan later took the song to a recording studio … and the rest is history.

Ms. Sheridan put the words to music and the song was recorded at the Riverview Digital Recording Studio in Bear River, with studio owner Blair Cromwell on guitar.

The first 500 CDs sold quickly and only 175 remain of the second batch of 500.

If they continue to sell well, a corporate sponsor will be sought for the next batch. Fifty were also shipped and sold in Ontario. All proceeds go toward research for finding a cure for the disease.

“I’m very pleased,” Mrs. Hatchard said about the poem. “It’s gone beyond my wildest expectations. I had no idea it would be so well-received.”

She added, “It’s amazing to me that those simple little words went so far.”

Mrs. Hatchard said the money isn’t much compared to the millions required to find a cure.

“But it’s our little part.”

Visit the Chronicle Herald website to read the entire story, and learn how you can order your own copy of the CD.

There was a wonderful article this week in the Lexington (KY) Herald-Leader about a little girl with spinal muscular atrophy who wanted to keep attending preschool, and the technology that allowed it to happen.

Dani Pruitt, who has SMA Type 1 and will turn four years old in the spring, went to preschool at Rosa Parks Elementary for three days each week until recently. It had to come to an end when her mother decided she wasn’t strong enough to survive the viruses that are usually passed around a classroom in the fall and winter. But, Dani wanted to keep going to school. The solution was to place a laptop and a webcam in both the classroom and in Dani’s bedroom. The article picks up the story from there…

Dani insists on participating in all aspects of school. When preschoolers in the Rosa Parks classroom are charged with washing their hands at the sink, Beth Pruitt thinks her daughter can use hand sanitizer.

But Dani presses her.

“With soap and water,” she says. Her mother carries her to the sink.

When it comes time to dance to the Wiggle song, Dani sings along in a whisper as her mother moves her arms, her legs, her fingers so she can make the same motions as her classmates.

“I can’t say enough about Rosa Parks,” says Beth Pruitt. “They look for ways of helping without us asking.”

Dani has outlived the predictions of all of her doctors. Most children with Type I SMA don’t live past two years old. Dani’s mother, Beth, says she doesn’t pay attention to the prognosis anymore.

You can read the entire article here. There’s also a great slideshow of Dani enjoying school, which you can find here.

Two wheelchair accessible playgrounds under construction doesn’t constitute a trend, but we hope it turns into one!

There have been two recent articles from west coast newspapers about towns building wheelchair-accessible play areas, citing SMA kids as examples of children who can’t utilize traditional playgrounds.

The first article, which ran in the Seattle Post-Intelligencer, tells of a play area in Rainier Valley that’s still under construction, and sounds wonderful…

After five years of work, The Seattle Children’s PlayGarden is quietly thriving with a new basketball court, wooden planting boxes full of strawberries, blueberries, tomatoes, cabbage, corn, beets and radishes, flower beds and picnic tables.

The garden, though, remains a work in progress. Designers have ambitious plans that go far beyond ramps and wheelchair-friendly wood chips. By 2009 they envision a fully accessible tree house, butterfly garden, marsh, classrooms, kitchen, rock scramble, sensory garden, orchard and, of course, a working garden.

It is a detailed plan to accomplish a simple goal of letting all children, those with disabilities and those without, enjoy a neighborhood park.

At many parks, 6-year-old Annie Jones can’t navigate steps up slides and needs a deep swing with a high back because she has spinal muscular atrophy.

“I don’t go on anything,” said Jones, who uses a motorized wheelchair, referring to older parks.

Yet, Jones is like any child. She plays ball with her two sisters, Claire and Lillian, and swings when she can find an appropriate set.

“I don’t see a whole lot of kids in wheelchairs, but I also feel they don’t come out to parks because there is not a whole lot for them to do,” said Annie’s mother, Diane Jones.

Once the PlayGarden is finished, Annie Jones will have plenty to do: work in its garden, play in its water installations and swing.

You can read the entire story at the Post-Intelligencer website.

Meanwhile, down the coast in Orange County, California, the Orange County Register has the story of Courtney Faye Smith, a 10-year-old little girl who asked for a place where she could play like the rest of the kids. The request came when she was four years old. After six years of debate and wrangling over the location, an animated playground called Courtney’s Sandcastle, will be under construction this fall…

The plan calls for two play structures – one, for ages 6-12, taking the form of a castle with a drawbridge and moat. The other, for ages 5 and under, will be in the form of a ship surrounded by an ocean, serpents and sand. The colored surfaces will be rubberized. The swings will have standard seats and special ones for those who arrive in wheelchairs.

In a sensory garden, plants will emit aromas when touched. There will be plants sheared into the shape of animals, a sand-digging area, interactive musical panels, wind chimes, a water sphere and a rock mountain that comes to life with sensor-activated water features and a dragon that breathes mist.

The land and some of the funding for the park is is being donated by SunCal, a developer building a nearby housing community. The park is expected to open by the fall of 2008. To read the whole story, visit the Orange County Register website.

The video slide show below was created by Jim Vaile and was shown in April, at the 2007 FightSMA Spinal Muscular Atrophy Conference in Washington, DC. It features images of the children of FightSMA. They are the reason for our fight.

A big thanks to Jim for a great video.