Troubles with Tibial Hemimelia

Faith lives in the Caribbean. Year-round warmth, white coral beaches, and crystal-blue waters beckon to countless tourists. But even in the bright tropical sun, there’s a dark side to life. The remote location of the islands makes it hard to access specialized medical care. This includes treatments for birth defects, such as tibial hemimelia.

When Faith was a baby, doctors found out she had tibial hemimelia. Tibial hemimelia is when the tibia (shin bone) is either too short or entirely absent. It often affects other bones in the leg, ankle, and foot. In this case, Faith is missing a main bone in her right foot. Faith’s mother, Stacey, was worried: “She cannot walk without major reconstructive surgery.”

“She cannot access care at home,” said Stacey, “so we had to travel to the US.” The good news was that a Shriners Hospital in Los Angeles had an orthopedic surgeon on their team who specializes in tibial hemimelia.

“We were able to get an appointment for Faith,” said Stacey, “and so began our journey.”

Clearing the Hurdles

However, two hurdles came up. The hospital was almost 4,000 miles away from Faith’s home. Her family wasn’t able to afford the airfare.

Mercy Medical Angels helped Faith clear those hurdles. A partnership with American Airlines made it possible for Faith to fly to Los Angeles. Faith visited an orthopedic surgeon for a medical consultation regarding treatment for tibial hemimelia. “Thanks to Mercy Medical Angels,” said Stacey, “this trip was possible.”

International Hope

Faith will have to continue flying to the US for surgery and checkups. Mercy Medical Angels and American Airlines will be with her all the way.

When asked about how Mercy Medical Angels and American Airlines helped Faith, Stacey answers with joy. “Without this assistance from Mercy Medical Angels and American Airlines, this consultation at Shriners would not be possible for Faith. Thank you, from the bottom of my heart!”

Often, children like Faith cannot access medical care in their home countries. Mercy Medical Angels and American Airlines are ready to help. No matter where they live, children can travel around the world for healing.

“Thank you, from the bottom of my heart!” ~Stacey, Faith’s mother

Problems with “Autism Awareness”

This April, you’re probably going to witness what appears to be a surge of support for autism. Puzzle pieces will pop up like weeds in the garden. Requests to “light it up blue” will glare in your face like an interrogation lamp. Fundraisers may very well flood your local area like a spring rainstorm. It’s all for a seemingly good cause: “autism awareness.”

However, what seems like an outpouring of aid is more like a destructive tsunami. These calls for “autism awareness” are not helpful, but harmful. Autistic people don’t need awareness. Instead, they need acceptance.

Autism Speaks? More Like Autism Silenced.

Unfortunately, it’s easy to find misinformation this April. You probably have questions about autism, so you decide to look up Autism Speaks. Surely they’ll have some decent information – right?

Wrong.

Autism Speaks says they support autistic people. They came up with this whole “autism awareness” thing in the first place. However, they’re doing the opposite. Their very name is an oxymoron: no autistic individuals serve on their governing board.

“But what about John Elder Robinson?” you ask. “He’s autistic, and he was on their board!” Key word was. In a cunning PR move, Autism Speaks pulled him on. However, Robinson soon resigned. He realized that Autism Speaks wasn’t helping his demographic. That puts Autism Speaks back to square one when it came to listening to autistic voices.

Awareness of ABA

On top of the ironic name, Autism Speaks is dedicated to “curing” autism. To do this, they promote treatments such as Applied Behavioral Analysis, or ABA.

ABA is like obedience school for misbehaving dogs – except it’s used on autistic people. It aims to hide the symptoms of autism, such as stimulating behaviors (“stims”), dislike of physical contact, and sensory issues. This is accomplished with negative reinforcement. A common warning phrase is “quiet hands.” If this is not heeded, cue punishment. These punishments include withholding toys, games, books, and in some cases, even food. Also, physical restraint is often used.

Does it hide the symptoms of autism? In most cases, yes. However, long-lasting trauma often comes with it. ABA also is linked to a rise in various forms of abuse. Instead of learning about personal boundaries, people who have gone through ABA are forced to endure the opposite. When their boundaries are violated in a relationship, they worry that protecting themselves and saying no will result in punishment.

Prepare for Scares

On top of the harm caused by ABA, Autism Speaks spends a lot of money on marketing and advertising. Their campaigns portray autism as a scary disease. In these campaigns, autism rips apart families and steals children. Some of their stories go so far to support eugenics – put bluntly, killing autistic people. According to these tragic narratives, it’s better to be dead than to live with autism.

Again, this is a prime example of not heeding autistic voices. Many autistic people do not wish to be cured. Autism is something they’re born with, like a certain eye color. It is not a disease they develop, like cancer. Think of it this way: if you wouldn’t kill a cancer patient, why would you kill an autistic person?

So What Can You Do?

For starters, don’t go to Autism Speaks. More than 90{f77eda0a441a5392985456a36d9467949e304252615cb77080f0e5eccc27b851} of their funds go to administrative expenses, catering, and events. Instead, check out organizations like the Autistic Self-Advocacy Network (ASAN) – they’re run by autistic people, for autistic people. Rather than making the move to “light it up blue,” use “Red Instead.” Don’t display the puzzle piece – this is the logo for Autism Speaks.

What if you meet an autistic person? The chance of this happening is more likely than you think. Don’t be alarmed if they start exhibiting stimulating behaviors (“stimming”). Be respectful of personal boundaries. If they’re up for socializing, ask them about their special interests or what they like to do. If they’re not up for socializing, don’t force a conversation. Talking down to them or using cure rhetoric is only going to hurt them, so don’t do that. Finally, show acceptance for who they are, autism and all. Acceptance beats awareness every time.

Autism Acceptance

This April, ignore the flood of “autism awareness.” Keep this information in mind. Share it with someone who wants to learn more about autism. To conclude, don’t be puzzled – support autism acceptance!

Blindsided by Rare Conditions

Victoria lives in Gloucester, Virginia. She was very athletic; her favorite sports were soccer and gymnastics. However, a few years ago, her active life took an unexpected tumble.

She was diagnosed with three rare conditions.

Postural Orthostatic Tachycardia Syndrome (POTS) affects her blood flow when she stands up from lying down. Ehlers-Danlos Syndrome harms her connective tissues. Myasthenia Gravis attacks her involuntary muscles.

The three rare conditions disrupted Victoria’s active life. She had to stop playing soccer, and could no longer participate in gymnastics. “I went from being active and playing sports to not being able to walk for long distances,” said Victoria.

Hope Lost…

“There’s nobody in Virginia who can treat my rare conditions,” said Victoria. Specialists at Mayo Clinic would give Victoria the best treatment possible. There was only one problem: Mayo Clinic is more than 1,500 miles away from home. Her family couldn’t afford the cost of long-distance transportation.

It seemed all hope was lost.

…And Found

That was when Mercy Medical Angels and Southwest Airlines flew to the rescue. They provided free airline tickets, which enabled Victoria and her family to travel.

“My family cried when they heard the news,” said Victoria.

Victoria can travel to Mayo Clinic and receive the care she needs. Even though she suffers from three rare conditions, the treatment at Mayo Clinic is improving her quality of life.

Finding Her Wings

In one word, Victoria describes her experience as “phenomenal.” She also made a good point, saying that “people don’t know how important charity is.” Her hope is that people realize the importance of giving back, so that she and other patients can continue to access medical care.

“I’m more than grateful,” says Victoria. When rare conditions push young people like Victoria down, Mercy Medical Angels and Southwest Airlines help them find their wings.

“ ‘Twas the night before Christmas,” the old lines tell of glory

But I, a volunteer pilot, will tell a new story.

The airport was shining with colorful lights

In hopes that night pilots would have safer flights.

The planes tucked in hangars, the pilots in bed

While visions of clear flying danced in their heads.

Meanwhile, I couldn’t drift off to slumber

Too much hangar coffee had done a real number.

Then out on the runway, there arose such a clatter

I leapt out of bed to see what was the matter.

Sprinting outside, I hoped it was a joke

Praying that nothing had gone up in smoke.

All of a sudden, something came down

Like iced-over wings, plummeting to the ground.

That’s when I realized I had to act quick

Because that falling object was beloved St. Nick!

“Santa,” I shouted, “get control of your sleigh!”

Santa was panicking, and cried out “Mayday!”

“Whoa, Dasher! Whoa, Dancer! Whoa, Prancer and Vixen!

Whoa, Comet! Whoa, Cupid! Whoa, Donner and Blitzen!”

“Try to make a safe landing, we’re in a stall!

Slow down, I beg you! Slow down all!”

Grabbing two batons, I sprang into action

This was an emergency, no time for distraction.

I got Santa to land in that moment of distress

The sleigh wasn’t shining, it looked like a mess.

That’s when I wondered, “What happened on this task?”

Santa sighed in reply, “It’s funny you asked.”

Santa explained, “Christmas magic wears thin

People don’t believe, and they let hatred win.”

Santa’s words brought tears to my eyes,

“Well, I believe. That’s one reason I fly.”

That’s when a glimmer came over the sleigh

Then, dimming like stardust, it just fell away.

I got an idea, and it gave Santa cheer:

“Kindness restores magic, you can still go this year!”

“Well then, good pilot,” said Santa, “please tell me why:

What makes volunteer pilots want to fly?”

I thought for a moment, got my words on track

And hoped what I said would bring magic back.

“Children with illnesses, needing the sun

We fly them to summer camp, where they can have fun.”

Veterans who suffer from deep inner strife

We help them fly over the clouds in life.”

“Cancer patients losing hope, for aid they are crying

We fly them to treatment and stop them from dying.”

A miracle happened: the more stories I told

The more the sleigh sparkled and glittered in gold!

Santa went from sad to smiling in a minute

We fixed the sleigh together, and then he jumped in it.

“Thank you, good pilot, now I’ll fly away!

You’ve done so much this year, and saved the holiday.”

“You’re welcome, Santa! And stay safe up there!”

Sleigh bells jingled, and Santa soared up in the air.

But I heard the kind words, as he went into flight:

“Merry Christmas to all, and to all a good night!”

Winter Battleground

Winter is a quiet season. Snow blankets the ground with sparkling pure white. Silver icicles glisten on branches. Frost glitters on rooftops. The oblique rays of the sun reflect on the ice. The air is hushed, punctuated only by small birds and the wind in the trees.

But when someone is suffering from cancer, the peace of winter contorts into a battleground. It’s hard to get a footing on slippery terrain. Resources run out. Victory seems far away – or sometimes even impossible.

Mary was trapped on one such battleground.

Stuck in the Snows

Not too long ago, Mary contracted “a debilitating illness, from which I never fully recovered.” This illness caused her resources to plummet. Her only source of income is a small amount from Social Security.

On top of the first illness, Mary contracted colon cancer. It rapidly got worse, sliding to Stage 4 within a short period of time. Her last hope was treatment at Cleveland Clinic, but she couldn’t afford the travel. The clinic was more than 700 miles away from her home in Alabama. It was like she was stranded on a snowy road, with no way out.

No Delay

Luckily, Mercy Medical Angels and American Airlines lifted Mary from her predicament. Mercy Medical Angels and American Airlines found round-trip flights for her. She had to go back and forth through most of 2018 for treatment. She started off with twelve rounds of chemo. Then, a new development occurred in her treatment.

“It turned out that there was a new immunotherapy drug,” said Mary. “My genetics make me the textbook candidate for it.” This new immunotherapy drug is beating back the colon cancer. Most of all, it’s saving Mary’s life. She says, “The flight assistance been essential for my medical care.”

Sweet Victory

Mary is grateful to Mercy Medical Angels and American Airlines for playing a critical role in saving her life. “Mercy Medical Angels and American Airlines have provided kindness, support, and care that has made a huge difference in my life.”

Battling cancer is not an easy fight. It can make the quiet season of winter into a time of despair. But with help from Mercy Medical Angels and American Airlines, patients like Mary have a chance at winning in winter.

mary at  winter party

An Impressive Résumé

Keith has helped many nonprofits for more than 30 years. In that time, he’s made his mark in development and fundraising. His positive attitude is contagious, and he has the skills to help a nonprofit succeed.

But what’s most interesting on Keith’s résumé is his involvement with Mercy Medical Angels as Development Director. Before accepting a job as Development Director, he was one of the patients who needed transportation.

Cost of Cancer

In 2017, Keith was diagnosed with acute myeloid leukemia. He had been working in development at an organization that helped low-income children. However, he had to enter long-term cancer treatment and as a result he lost his job. “My insurance didn’t cover all the costs associated with treatment,” said Keith.

Keith’s best chance at healing was a stem cell transplant. Fortunately, his brother was a match. Then he ran into another problem: his brother lives in California. Round-trip airfare would have added to the financial drain. On top of this, Keith had to go to Duke University for the transplant, which was far away from his home in Hampton Roads. Aside from running out of resources, Keith was running out of time.

New Development

As Keith found out, this story wasn’t over. Mercy Medical Angels gave Keith’s brother a round-trip flight for the transplant. Keith received gas cards so he could go to Duke. His wife drove him back and forth to treatment – “she’s an outstanding caregiver,” said Keith.

Since stress slows the healing process, Mercy Medical Angels accelerated Keith’s journey to healing. “They helped me focus on treatment and recovery,” said Keith, “instead of the financial burden.” To describe his experience with Mercy Medical Angels in one word, Keith chooses “relief.”

“If it weren’t for Mercy Medical Angels, I wouldn’t be here.”

The Helped Becomes The Helper

Now, Keith works as the Development Director for Mercy Medical Angels. He encourages people to donate to Mercy Medical Angels: “Their donations are providing hope and saving lives,” said Keith. He’s ready to take on development once again, helping patients who are traveling the road he was on. “I hope I’ll be able to help Mercy Medical Angels, and the many great people that it serves.”

In the classic wisdom of nonprofits, the people who receive help often end up giving back. Many of the patients that Mercy Medical Angels have helped are giving back in the usual ways. They donate money, write thank you letters, or send holiday cards. Keith’s way of giving back is truly unique… it’s not every day a patient becomes a staff member!

keith development director mercy medical angels
Say hello to Keith! He’s the new development director at Mercy Medical Angels.

Life with Ehlers-Danlos Syndrome

Diana was hyper-flexible as a child. As with many “double jointed” children, she showed off her abilities. “In my youth, I often entertained friends with all my ‘tricks.’ I grew up thinking most people could do these things with their joints.”

But as the years went on, Diana began to suffer from chronic pain. Even when she stopped doing “tricks,” the pain persisted. At 40 years old, she found out why: she had a rare connective tissue disorder called Ehlers-Danlos Syndrome. It enabled her to manipulate her joints in ways that most people can’t, but this caused irreversible damage along with chronic pain. Diana describes the condition as “being held together with paste instead of superglue.”

Grasping for Help

After receiving the diagnosis, Diana needed to find out more and receive treatment. Unfortunately, some of her doctors caused more hurt than healing. They didn’t know much about Ehlers-Danlos Syndrome, and a lack of understanding often led them to questionable decisions. In some cases, the doctors would “push patients to do the very ‘tricks’ that were so damaging and painful.”

On top of the lack of knowledge, surgery can be dangerous for Diana. Anesthesia doesn’t always work as intended. There’s a high risk of her bleeding out. Stitches don’t always hold.

Diana’s best option for treatment was at National Institutes of Health (NIH) in Maryland. Normally, she would drive to and from the appointments. But as time went on, it was almost too painful to move. And having someone else drive wasn’t an option either: “The ride itself was painful and it took up to three or four days to recover.”

She needed to find another way to travel.

Flight of Opportunity

Mercy Medical Angels’ volunteer pilot program gave Diana the means to travel back and forth to NIH. “Without it,” she says, “there’s no doubt that I’d be in a wheelchair permanently.”

Diana considers herself “lucky” to have found doctors who know what they’re doing. “To see my doctors and surgeons in Maryland has saved my life and retained the quality of life I do have.” In addition to her treatment, Diana also held a conference about Ehlers-Danlos Syndrome for medical staff, along with workshops for patients and families.

“Angel Smiles and Genuine Compassion”

Diana’s gratitude overflows when she tells about the volunteer pilots who have flown her to NIH. “Down to every single one I have flown with, they are there with a smile, letting you know upfront that they are there for you.” Diana also thanks MJ, who coordinates the volunteer pilot flights: “She’s one of the real life angels of Mercy Medical Angels.”

“It’s those angel smiles and genuine compassion that stay with me,” says Diana. With help from Mercy Medical Angels, Diana can rest assured that everything will stay connected.

Battling Bile Duct Liver Cancer

Marlin was diagnosed with bile duct liver cancer. The doctors in his local area were unable to treat it. As he searched for treatment options, Marlin found out good news and bad news. The good news: specialists at MD Anderson could help him. The bad news: MD Anderson was more than 700 miles away from home. Also, the long distance presented a second problem: “Travel, especially by air, is expensive.”

His treatment required frequent round trips. “I have to go every two to three months,” Marlin said. Marlin needed help, and he needed it quickly.

“A Tremendous Help”

Fortunately, Marlin wasn’t fighting solo. Mercy Medical Angels arranged flights for Marlin, through Delta. However, there was an added obstacle: bile duct liver cancer had sapped Marlin’s energy. He needed a wheelchair to get around the airport. Marlin said, “Delta was very helpful with wheelchair assistance.”

“Mercy Medical Angels was a tremendous help in making my flight to MD Anderson Cancer Center possible,” said Marlin.

Frequent Flyer

Marlin was able to fly to MD Anderson twice. His battle isn’t over yet, but he’s on the way to healing. Mercy Medical Angels will continue to help him fight through flight.
“Mercy Medical Angels eased the financial burden of the trip,” said Marlin. Without the stress of uncertainty, the travel assistance enables him to focus on treatment and healing.

I am very thankful for their help as I battle bile duct liver cancer.”

Marlin’s Message

When asked how he would describe Mercy Medical Angels in one word, Marlin answers with sincerity and gratitude. “My one-word description would be ‘great’,” said Marlin. Aside from this answer, Marlin adds a message to potential donors.

“For those who can give financial support to Mercy Medical Angels,” he said, “I would recommend this organization as a great place to help others in their time of need.”

Marlin has a long road ahead of him. But with the help of Mercy Medical Angels and Delta, he doesn’t have to walk it alone.

bile duct liver cancer patient at md anderson
When it comes to cancer treatment, Marlin doesn’t have to walk alone.

Cardiac Troubles

In 2017, Brenda went to the doctor for a series of tests. The results were grim: she had blood clots in her lungs. She had to take blood thinners to dissolve the clotting. She was put on oxygen so she could breathe more easily. More tests revealed more problems: Brenda had a hole in her heart. These two conditions may have proven fatal – unless she could get specialized surgery to fix her cardiac troubles.

Racing Against The Clock

The best cardiac surgeon to help Brenda was located in San Diego. However, Brenda lives in Illinois. She’d have to fly more than 1,500 miles away from home to receive the surgery. Long-distance airfare would have drained her resources. Worse, time was running out. Brenda’s life depended on the flight.

Gracious Assistance

Mercy Medical Angels was able to help Brenda fly to San Diego for the surgery. Her mother accompanied her. Since it was their first time flying, they didn’t know what to expense. “The airline was very helpful,” said Brenda. The airline made sure to provide wheelchairs. Aside from the usual help, Brenda and her mother received assistance with their carry-on luggage.

One of the highlights of flying is a bird’s-eye view of the landscape. Brenda and her mother were experiencing flight for the first time ever, and didn’t know what they were looking at. Luckily, the airline was happy to help. “The pilots were really helpful when it came to sights that you could see below.”

Overall, Brenda said her flight was “great.”

Saved in San Diego

Once in San Diego, Brenda rushed to the hospital. The surgeon had to fix the hole in her heart. On top of that, the blood clots in her lungs had gotten worse. Nineteen clots had to be removed. It was a difficult operation, but Brenda made it through.
“It was a life-saving procedure,” said Brenda. The surgery went beyond saving her life. It also improved her life overall.

Not the End

Brenda says she couldn’t access the surgery without the flight assistance from Mercy Medical Angels. She thanks Mercy Medical Angels for their role in saving her life. “Without your help,” she said, “I don’t know how long I’d be here.”

Now, Brenda is on her way to healing. She’s experiencing a better quality of life. She can breathe easy knowing her finances are stable. Most importantly, this is not the end for Brenda. It’s a new beginning.

When cardiac patients like Brenda encounter deadly conditions, Mercy Medical Angels gives them the freedom to live.

Unhappy Holidays

The holidays are a season of gratitude and giving. Some may celebrate in good health. However, there are many individuals who aren’t as lucky during this happy time – such as breast cancer patients.

Imagine if this holiday season you were diagnosed with Stage IV breast cancer. On top of that, your oncologist tells you that you only have a few months left to live. A warm, loving season immediately turns cold and cruel. The winter’s beauty becomes a whiteout blizzard of despair. And otherwise happy holidays twist into a time that is rather unhappy.

This scenario was the reality for Serenity.

Fighting for Her Life

Serenity lives in California with her son. At the time of her breast cancer diagnosis, her son was only two years old. The oncologist told her she had three months left to live. Serenity didn’t accept this grim statement for a final answer.

“I refused, in a haze, to take that prognosis for an answer,” said Serenity. “I was determined to fight but I didn’t know where to turn next.”

One of Serenity’s friends decided to research different cancer centers. MD Anderson Cancer Center in Houston offered the best chance at treating her breast cancer. There was even a glimmer of hope that they could save her life. There was only one problem. The cancer center is almost 1,500 miles away from her home. Her income is limited, and she has to take care of her son as well as herself. Traveling to the treatment would be almost impossible. “I just don’t have the funds,” said Serenity.

Fight through Flight

Mercy Medical Angels worked together with Southwest Airlines. Southwest Airlines had a flight available. From there, Mercy Medical Angels secured round-trip tickets. Serenity was able to fly to MD Anderson for cancer treatment.

“In the three months that I was given to live, MD Anderson did not give up on me,” said Serenity. The doctors that treated her “sped into high gear.” In those three months, Serenity had the best care possible.

“Mercy Medical Angels helped keep me alive by flying me to Houston for my treatments and scans,” said Serenity. The flights from Mercy Medical Angels and Southwest helped Serenity to fight breast cancer. Most importantly, they managed to save her life.

The Best Gift of All

Serenity isn’t giving up her battle. She has “top of the line doctors” continuing to help her. Mercy Medical Angels and Southwest will keep flying her until the cancer goes away.

In a season where people focus on gifts, cancer patients like Serenity have a reason to celebrate. She thanks Mercy Medical Angels and the donors for their role in saving her life. And life is the best gift of all.