Perthes Pals

That Day WILL Come

One of our very own Perthes Pals, the Jackinator, just ran a 5K this past weekend!  As much as it seemed like that day would never come, it did, and we can't wait to hear YOUR success story...

Battler of Rare Hip Disease Completes Forest Park 5K

No Negative Attitude Here!

Here's a great article about a boy named Benjamin Rutkowski, who was diagnosed with Perthes Disease 10 years ago.  He's been through quite a bit, and so, as part of his Eagle Boy Scout project, he decided to collect new & gently-used medical equipment to donate to Shriners Hospital for Children in Erie, PA.

I like his quote at the end of the article: 

“If I had a negative attitude, I wouldn’t be able to do half of the things I am able to do.”

Full article can be read here, courtesy of www.thesunnews.net

The Art of Perthes

Creating Art is a great way to spend your time during these difficult years, whether it's drawing, painting, writing or creating videos (my son's favorite thing to do right now; he's currently inbetween surgeries and is taking advantage of his 'good health' at this time).

And who knows, it may change your life!

Artist's Work Reflects Life Experience
Courtesy of CharlotteObserver.com

Joseph Suttle was in first grade when he noticed he could no longer keep up with the kids during recess.

The pain in his legs got so severe he eventually passed out. Doctors diagnosed him with Legg Perthes Syndrome, a hip disease. The treatment confined him to a wheelchair for three years, then a year on crutches.

Unable to play with other kids, Joseph took up drawing and painting. By middle school, he had a reputation in his hometown of Shelby as a talented artist.

Read more: http://www.charlotteobserver.com/2011/01/30/2014507/artists-work-reflects-life-experience.html#ixzz1CoL4pYIN

Dream Factory

I just came across this non-profit organization called the Dream Factory that grants wishes to kids with life-altering conditions, such as Perthes Disease.  Maybe there's a chapter near you!

Dream Factory's mission:

In 1980, The Dream Factory began with one all-volunteer chapter in Hopkinsville, Kentucky.  Since then, The Dream Factory has grown into the second-largest children’s wish-granting organization in the United States, granting over 25,000 dreams since its inception --all while maintaining a grassroots approach.  The Dream Factory continues to operate all 38 of its local chapters with over 5000 very dedicated volunteers.  These hard-working individuals raise funds within their own communities and then use those funds to grant the dreams of local children.  Because we do not employ people on a local level, 84% of all money raised by The Dream Factory is used directly to grant the dreams of critically and chronically ill children. 

The Dream Factory is the only children’s wish-granting organization that does not limit its mission to children who have life-threatening illness.   The organization believes children with chronic illnesses and disorders also suffer from substantial emotional and physical pain.  We strive to provide hope and relief from the trauma and corresponding stress and depression that both the children and their families can endure on a day-to-day basis.  Doctors agree that providing a dream can improve the quality of life for these children and extend the life of a critically ill child.

Inventor Extraordinaire!

A 10 year-old boy with Perthes Disease has invented a bike warning system, called The Bike Bleeper, and is a finalist in a young inventors competition!  This was inspired by the tragic death of a friend.  Good luck in the competition, Tybalt.  In battling Perthes Disease, you're already a winner in my book...

Full story by Samantha Castle at North Wales Weekly News

Yes, you CAN play soccer again

Courtesy of The Ball State Daily News

SOCCER: First-year coach knows how to beat the odds
Craig Roberts succeeds on field after overcoming childhood disease

By Conor Hockett

Craig Roberts didn't doubt his team's chances when Ball State soccer was picked to finish last in the Mid-American Conference this season. He embraced the Cardinals' underdog role. He's beaten tough odds all his life.

At age 5, Roberts was diagnosed with perthes, a disorder that causes hip bones to break down and regrow with weakness or deformity. Today's medical advancements have increased recovery chances for perthes' patients, but the prospects were dim when Roberts was a child.

Doctors put casts and a brace on Roberts' legs. He wore them for five years and was told he would never play sports.

"It was really a choice to be upset and feel sorry for yourself or do something about it," Roberts said. "Nobody is going to give you any breaks, so you have to do it yourself. It was one of those ‘you can't do it' situations, so you want to go out there and prove them wrong."

After the casts were removed, Roberts relearned how to walk. He made a list in his head of all the things he wanted to achieve, things no one said he could do. He was determined to live his childhood passion of playing and coaching soccer.

It took him a year and a half of vigorous physical therapy, but he made it onto the soccer field.

He participated in national school boy tryouts before competing at semi-professional and professional levels in England for four different teams. Roberts went on to be a four-year starter and captain for Park University in Missouri.

Click here to read rest of story

Bed Rest and...Bats?!?

Imagine having to contend with bats and bomber planes, not to mention 3 years in a hospital...

Courtesy of Pontefract and Castleford Express

Wartime hospital experience

TOWNVILLE man Terry Swift has submitted this picture of patients at the Marguerite Hepton Orthopaedic Hospital in Thorp Arch, near Leeds, taken about 1944.

Mr Swift, now 75, was a patient at the hospital for three years after being diagnosed with Perthes’ disease in his left hip when he was eight. The disease, which causes a limp and other symptoms, commonly affects children between the ages of four and eight, mostly boys.

Mr Swift said that during his stay he was given various treatments mostly consisting of bed rest and fresh air.

He added: “We were put out on a covered veranda on some winter nights and sometimes we woke up with snow on the end of the bed.”

As well as freezing nights the patients were also exposed to sunburn, visiting bats and bomber planes during wartime air raids.

The picture shows the youngsters on the veranda – Mr Swift is indicated with a cross.

He added: “As the years have gone by I’ve forgotton the lads’ names but they all came from surrounding 
districts.”

There's Snowboarding after Perthes

Here's another uplifting story about a Perthes Disease survivor.  He is now 11 and was diagnosed with Perthes Disease 5 years ago.  He did some traction but was not a candidate for surgery.  And he is now able to snowboard!  Click here to read the story.

Update on Jack

We met with Jack's orthopedic doctor today and Jack is off restrictions for the upcoming school year!  The full update can be found on his blog, along with what we've been up to this summer.  It's been a really good summer, probably because the previous year and a half had been the worst year and a half for us.  He is not out of the woods yet, but things are looking up, I think.  Last year, he started school in a wheelchair; this year, he'll be able to play 'normally' at recess.

 

Jackinator Blog

hi

hi my name is joseoh helmy and i just got back from fl where i got my surgery. and i had dr.paley. i have a brace and after  few weeks or a few days you get realy comfterble in the brace my surgery was very minor because dr.paley onley had to drill one hole alot  of the times the have to drill three holes.