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Mar 062014
 

Superhero clubby Lisa M.A. Winters, contributing writer

According to the American Heart Association, nine out of 1,000 babies are born with some sort of congenital heart disorder (CHD).  When Kitty Burton of Omaha, Nebraska had her son Sam diagnosed with a CHD in utero, she nearly fell prey to the expected feelings of helplessness one might expect.  However, instead of drifting into despair, Kitty had an idea one day – she would get a superhero’s cape for her son, a way for Sam to remember that he is strong and powerful even when he doesn’t feel that way, or his parents can’t be there to remind him.

Heart Heroes’ not-so-secret origin started with this cape comment Kitty made to her friends: other moms whose kids have CHDs.  Then when she found Superfly Kids in her cape search, with the flawless timing of true superheroes, the children’s novelty-clothing maker partnered up with these beleaguered yet hopeful parents.  Parents can order custom capes for their own little superheroes on the Superfly Kids page.  Donations support the young heroes getting kitted-out – and not just local heroes. Heart Heroes has sent capes to kids in Australia, the United Kingdom, South Africa, Canada, Mexico and almost every state in the U.S.

“It gives them courage as they go to all the doctor’s appointments,” said Kitty to NBC affiliate WOWT.

“Our kids are heroes and we know it, so it’s comfort for us as well.”  Kelly Whisinnand, another mother  interviewed by WOWT, says her son Duncan, who has a CHD, runs around in his cape all the time, and “Seeing all the other superheroes running around, it’s just amazing.”

It’s not all satin and sparkles, though.  The Cookie Company in Omaha, Nebraska has created an array of CHD Awareness cookie gifts boxes, donating 30% of sales of these Heart-Hero-logo-shaped treats back to the charity.  A superhero has to stay fed, right? Just ask The Flash.

Speaking of The Flash, he might not be allowed to participate at the Super Run events except for posing for photo opportunities.  The inaugural Super Run on this past October 13 had nearly 550 capes billowing behind their owners as Heart Heroes of all ages and their supporters took off around Lake Zorinsky in Omaha, Nebraska.  These superheroes, over five times the number expected, set out to bring awareness of CHD to the community as well as participate in healthy activity together and by all accounts it was a huge success.

Sometimes superheroes don’t need wild bats, spilled chemicals or radioactive spiders.  Sometimes they just need parents who believe in them.

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Feb 072014
 
Reece bike

Reece, April 2013

by Laura Davis, managing editor

Reece Puddington lives in Whitstable, Kent, England with his parents and three siblings. He loves to play Call of Duty, Assasins’ CreedUncharted, and Lego games. He’s a fan of Marvel and DC comics, and the Lord of the Rings and Hobbit movies. Reece has just celebrated his 11th birthday, and he’s just written his bucket list. Reece suffers from neuroblastoma and his latest relapse has left him bed-ridden.

In April 2008, Reece was five years old and kept complaining to his parents, Paul and Kay, that his back and hip hurt. When Kay took him to the doctor, the doctor suspected a kidney infection, but took the precaution of ordering some tests at the local hospital. They kept him overnight for observation, but since tests didn’t reveal anything serious, they sent Reece home, saying he probably had a virus.

A few weeks later, his back pain had increased, so Kay returned to the doctor with Reece, and they were sent immediately back to the hospital for more in-depth testing. The ultrasound they ran revealed a tumor on one of his adrenal glands, and they diagnosed it as cancer.

I asked Kay about that day. “When you are told the news you are of course devastated,” she explains. “You feel like somebody has ripped out your heart and stomach.  After about four days, you start to return to normal, and living with the illness almost becomes normality.  There is a part of you that wonders what you did to deserve it.”

During the following week, Reece was transferred twice between hospitals and fitted with a Hickman line (a specific kind of central line) in preparation for his first round of chemotherapy. It’s easy to imagine a five-year-old being terrified at all of this, but Reece took it in stride; he even named the line his “Wigglies.” They also gave him an NG tube for supplemental feeding, since he’d already begun to lose weight. Additional testing revealed that the cancer had spread to Reece’s bone marrow, sternum, pelvis, and right femur.  The official diagnosis: Stage 4 Neuroblastoma.

Kay adds, “They gave him a 40% chance of living ‘til end of treatment, and they told us he had an 80% chance of relapsing.”

Reece has, in fact, survived several rounds of chemo, a compromised immune system, sepsis, bone marrow biopsies, blood transfusions, and additional treatments. Although he’s been through a lot of ups and downs, sometimes spending weeks at a time back in the hospital, he’s had, until very recently, a surprising number of opportunities to just be a kid. His family’s Facebook pages are filled with photos of him visiting the local firehouse, playing outside, mugging for the camera, and riding his toy quad and his bike. On one special outing when he was nine, Reece and Paul visited Romans International.

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Paul wrote, “Can’t believe my 9 year old son just sat in 6 million pounds worth of cars! Thank you to Romans International for letting my son sit in the most amazing and most expensive cars ever.” Among Reece’s premium seating were the coveted Bugatti Veyron and Ferrari Enzo!

Does the rest of the family share Reece’s love for video games, comics, and other geekery? Kay says, “Paul isn’t really a fan of video games other than Facebook games; he’s very much into Star Trek and quite likes Stargate: SG1 and Babylon 5. Ryan tends to join in and play the same video games with Reece.”

I asked Kay how Reece’s brother Ryan (19), and sisters Jamie (16) and Nikki (13) were coping with Reece’s illness. She said, “They cope quite well, all in all, especially as they have had nearly 6 years to get used to it all.  Nikki struggles the most out of the three. She wasn’t old enough to really understand the first time round.  They are a great support to Reece and fully involve themselves with his treatment, care, and fundraising.”

Paul and Kay tried shortly after his diagnosis to get Reece an antibody treatment cocktail, which was developed in the U.S. The 3-drug cocktail was the most promising treatment available at the time, but in the U.K., only two of the drugs were available: a combination which had shown poor results in previous clinical trials.  “The other option,” Kay explains, “was to look at treatment in America and Germany, which, as you know, would not be free to us.” Going abroad for treatment would have cost the family approximately £500,000.

In order to expand Reece’s access new treatment options, the family set up a fundraising appeal. Kay explains, “The appeal was initially set up to cover the cost of supplements and therapies that can be beneficial with his illness but are not recognised as standard treatments, therefore they are not funded and the costs were then our responsibility.”

The National Health Service’s approved course of treatment for neuroblastoma consists largely of chemotherapy, and Reece has had at least 6 rounds. After a relapse in September of 2012 (scans discovered a tumor on Reece’s skull and spots on other bones), he needed a particularly aggressive form of chemo. Paul and Kay drove Reece 130 miles round trip each day for five days of the treatment, which made him violently sick. On day two of this course, Paul wrote that Reece had been up sick all night, “but after a 6-hour superhero film marathon, he’s finally not gagging any more … We just wish now the Hulk could come along and smash puny cancer!”

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The family opted to try some nutritional and natural therapies, in addition to the chemo. Then, in early 2013, Reece enrolled in a trial for the drug Ridaforolimus. Although Reece was the longest serving neuroblastoma patient in the trial and the drug did provide him 10 more months of quality life, he learned just before Christmas that he has relapsed. His tests show disease progression in his bone marrow and a new tumor, this one on his liver.

Earlier in January 2014, Reece had been offered spots in two different drug trials. I asked Kay whether these were still options for him. “The likelihood is that Reece is probably not going to be put through any more treatment but this decision hasn’t been officially discussed with the hospital and I guess never say never.  Reece is full of surprises and has never done what’s predicted with this illness.”

At the end of January, Reece wrote, “I’d thought about doing a bucket list ever since I relapsed but as I had spent the best part of it thriving and shifting disease, it isn’t something I wanted to rush. Given my recent decline in health, I feel now is the time and I’d like to share it with you all. Some things will be possible and some things will remain a dream, but they will be MY wishes.”

Reece, age 11, with Whetherspoons breakfast

Reece, age 11, with Whetherspoons breakfast

His list included several items which were donated almost immediately: an Alienware laptop; an Xbox; breakfast from Whetherspoons “with my favorite people,” which the restaurant donated and had delivered; A blue PS4 controller; and a Beats Pill speaker (Reece adds, “Let’s hope my neighbours like Imagine Dragons.”). He also said he’d like to see Kay learn to drive, and a local driving instructor donated his time to teach her.

Reece’s latest post says:

“The following wishes are the only ones that remain outstanding. Some things will be possible and some will remain a dream, but they will be MY wishes:

  • A bedroom of my own.
  • To see the Hobbit – Desolation of Smaug movie.
  • A holiday to Sun City in South Africa (I’ve always wanted to go since seeing the destination on Worlds Strongest Man)
  • Meet Johnny Depp dressed in character as Captain Jack Sparrow (my mum’s trying to do this as a surprise as they are my favourite movies)”

Johnny Depp is known for his charity work, especially where children are concerned, so we hope it will be possible for him to help Reece tick another item off his bucket list!

I asked Kay whether she had any words of encouragement for other families with seriously ill children. “Normality goes a long way, “ she said.  “It deflects attention away from the negative aspects of the illness and treatment and provides routine and structure.  Also quality time as a family where possible and the ability to laugh in a stressful situation.  Also there is light at the end of the tunnel.”

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If you’d like to contribute to Reece’s fundraising appeal, please use Paypal, and use the “Family and Friends” option to send to raise4reece@live.com.

Jan 282014
 

Today marks the 28th anniversary of the accidental destruction of NASA’s Space Shuttle Challenger, with the loss of all its crew, including Sharon Christa MacAuliffe, who was to have been the first teacher in space.

The Space Shuttle Challenger disaster occurred on January 28, 1986, when Space Shuttle Challenger (mission STS-51-L) broke apart 73 seconds into its flight, at the instant of main engine throttle up, leading to the deaths of its seven crew members. The spacecraft disintegrated over the Atlantic Ocean, off the coast of central Florida at 11:38 EST (16:38 UTC). Disintegration of the entire vehicle began after an O-ring seal in its right solid rocket booster (SRB) failed at liftoff. The O-ring failure caused a breach in the SRB joint it sealed, allowing pressurized hot gas from within the solid rocket motor to reach the outside and impinge upon the adjacent SRB attachment hardware and external fuel tank. This led to the separation of the right-hand SRBs aft attachment and the structural failure of the external tank. Aerodynamic forces promptly broke up the orbiter.

The crew compartment and many other vehicle fragments were eventually recovered from the ocean floor after a lengthy search and recovery operation. Although the exact timing of the death of the crew is unknown, several crew members are known to have survived the initial breakup of the spacecraft. However, the shuttle had no escape system and the impact of the crew compartment with the ocean surface was too violent to be survivable.

Space Shuttle Challenger crew members gather for an official portrait November 11, 1985. (Back, L-R) Mission Specialist Ellison S. Onizuka, Teacher-in-Space participant Sharon Christa McAuliffe, Payload Specialist Greg Jarvis and mission specialist Judy Resnick. (Front, L-R) Pilot Mike Smith, commander Dick Scobee and mission specialist Ron McNair.  Ms. McAuliffe was to have been the first teacher in space. She never made it there.

Space Shuttle Challenger crew members gather for an official portrait November 11, 1985. (Back, L-R) Mission Specialist Ellison S. Onizuka, Teacher-in-Space participant Sharon Christa McAuliffe, Payload Specialist Greg Jarvis and mission specialist Judy Resnick. (Front, L-R) Pilot Mike Smith, commander Dick Scobee and mission specialist Ron McNair. Ms. McAuliffe was to have been the first teacher in space. She never made it there.

The disaster of the Challenger reminds us, 28 years later, that the men and women who carry the beacon of Humanity beyond the safety of our homeworld do so at tremendous risk to themselves, and the possibility that they may not return is always on their minds and is always a clear and present risk.

Every advance, every opportunity and every new frontier in space comes because of the bravery of these men and women who risk their lives every time the main booster ignites.  That courage defines us as a species.

Whatever the future of space exploration holds for Mankind, we will owe a debt of gratitude that we can never repay.

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Dec 262013
 
jamieMacdonald

Jamie McDonald runs across Canada, with 700 miles to go.

Originally billed as the “British Forrest Gump”, Jamie McDonald, age 27, spent his Christmas Day running.  He is now less than 700 miles from completing his feat of becoming the first person to run across Canada without a support team.  He’s doing it dressed as The Flash after a public vote on Twitter and Facebook chose a costume for him.  He left Calgary on Christmas Eve.

The 5,000-mile coast-to-coast run is the equivalent of more than 200 marathons in 275 days, and involves Mr McDonald sleeping by the side of the road, or relying on strangers’ generosity as he undertakes the challenge.

He was a bit sad about not having finished his run in time to be back home in Gloucester for Christmas.

“I may have missed my original goal to be back home in time for Christmas with my family, and this has been upsetting, but I know every step I take is another step closer to reaching Vancouver and raising more money for the kids’ hospitals and foundations I’m running for,” Mr McDonald said.  “I’ve no doubt I may feel differently on the day when I think of what I could otherwise be doing, but I have plenty more Christmases to spend at home, I’m only planning to run across Canada once and I want to give it everything I have.”

Mr McDonald’s coast-to-coast challenge began in St John’s, Labrador, in March and will finish in Vancouver after passing through mountain ranges, national parks and along highways, and every mile is reaping funds for some important children’s charities.

Mr McDonald, who suffered from a debilitating immune deficiency and potentially fatal spinal condition syringomyelia as a child, spent the first nine years of his life in and out of children’s hospitals and is running to raise funds for SickKids Foundation, Great Ormond Street Hospital Children’s Charity and the Pied Piper Appeal.

Throughout his attempt, he is keeping supporters updated on Facebook, Twitter and YouTube, where he posts videos documenting his efforts.

Links