Health | Uplifting | Family

5 Celebs Open Up About The Joys And Struggles Of Parenting A Seriously Ill Child

Daily Mail

Sylvester Stallone's faith has been tested many times over the course of his life, but he managed to overcome all the hardships and is still standing strong.  

He met his first hurdle the moment he was born on July 6, 1946. Due to complications that arose during his mother's labor, the obstetricians had to use forceps to retrieve him, but in the process they accidentally severed a nerve. This resulted in the paralysis of the lower left side of his face, including his lip, tongue, and chin.

As he got older, he decided to pursue a career in acting, but that was no easy feat. Stallone's first starring role was in a softcore pornographic film, which he claimed he did out of desperation. He was evicted from his apartment at the time, and had been sleeping at a bus station prior to taking on the controversial role.

"It was either do that movie or rob someone, because I was at the end – the very end – of my rope," Stallone said in an interview a few years ago.

He eventually worked his way up the fame ladder with box office hits like Rocky, Rambo, and Demolition Man. He amassed plenty of awards throughout his decades-long career, including a Golden Globe.

However, Stallone struggled to find happiness in his personal life. He has been married three times: The first time was in 1974 to Sasha Czack. They welcomed two sons, Sage Moonblood in May 1976 and Seargeoh in 1979, before getting a divorce in 1985. That same year, he married model and actress Brigitte Nielsen, but their relationship ended in a highly publicized divorce two years later.

He finally settled down with his third wife, former model Jennifer Flavin, in 1997, and they now have three daughters, Sophia, Sistine, and Scarlet.

Still, Stallone had even more difficult times ahead, having to deal with losing one of his sons and raising a daughter with a serious medical condition.

In 2012, Sage Moonblood was found dead in his home. Although there was a lot of speculation surrounding the 36-year-old's sudden death, a toxicology report came back "negative except for a sub-therapeutic level of hydrocodone." Turns out, his death was brought on by a hidden heart condition.

"This agonizing loss will be felt for the rest of our lives," Stallone said in a statement. "Sage is our first child and the center of our universe and I am humbly begging for all to have my son’s memory and soul left in peace."

Just a few weeks after Sage was laid to rest, Stallone's 48-year-old half-sister, Tori Ann Filiti, died of lung cancer.

In addition to all the tragedy, the Stallones were subjected to another troubling situation: Sophia was to undergo heart surgery at the end of that year.

"This is a terrible year, a horrible year for him. Sylvester is devastated...," Flavin said at the time.

The oldest of the Stallone sisters was born in 1996 with a form of Congenital Heart Defect (CHD) called an atrioventricular septum. The condition occurs when a baby is born with a hole in the wall between the left and right sides of the heart, allowing blood to flow between the chambers. Although rare, the condition is curable with surgery.

Sophia was just two-and-a-half months old when she was forced to undergo her first open-heart surgery at a Los Angeles hospital. UCLA pediatric cardiologist Dr. Stacey Drant reassured the Stallones that they had nothing to worry about.

"Every child I've seen operated on has survived...In terms of surgery, it's a slam dunk," Drant told E! News.

Stallone and Flavin confirmed the news a week before the procedure, and thankfully, the surgery was a success, and Sophia was cleared to go home after a few days of observation.

"I've been staying at the hospital with Jennifer every night," Stallone said in a statement after the surgery. "I have been blessed with two miracles within the past nine weeks--that of my daughter being born and that of my daughter being reborn."

Unfortunately, around the age of 16, Sophia's cardiac malformation triggered a problem with a heart valve, and she required another surgery.

Considering everything the family had already gone through that year, the timing couldn't be any more worse, but both Sophia and her parents have been trying to make the best of the hand they were dealt with.

"Every day I think of my heart," Sophia told Paris Match magazine in 2012. "I eat really healthy, and as I get more tired than normal, I have to be very careful when doing sports. Now I have to have surgery again because the tissue they put in 16 years ago has widened and I have problems with the valves. If all goes well, I will spend five days in the hospital."

Sophia's mother then explained that the her illness has taken a toll on the entire family, but Stallone has taken it especially hard because he and Sophia have a special bond.

"She is the one that most resembles her father," Flavin said. "Like him she has read nearly all of Shakespeare's books. They have a very special bond, they think alike and even have the same gestures, Sophia is the love of his life."

Flavin also revealed that they had plans to make the remaining months leading up to the surgery as special as possible for their ill daughter. "This is Sophia's year. A very special year," said Flavin. "Sly and I have thought about everything she wants and what can make her happy."

They decided that she would attend the Bal des Débutantes in Paris, which was scheduled to take place a month before the surgery.

"Bruce Willis’ wife Emma told us about it after Tallulah participated last year. We put the idea to Sophia and she loved it," said her mother.

Sophia had the chance to dance with Stallone at the black tie affair, she later admitted that was her first dance ever with her father and it was "the best moment for me."

She successfully underwent surgery eight days before Christmas, and life has only gotten better since.

In a 2016 interview with The Telegraph, a 20-year-old Sophia candidly spoke about how much her heart condition impacted her and her family.

"I can do everything now," she said. "I just have these scars. And, actually, I feel like a better person today because of what happened – more of an old soul, I guess."

She continued, "It forced me to grow up, seeing my mum and dad freaking out the way they did. Watching them crying and looking so terrified meant that I had to hold it together, and when I was getting a little woozy just before, I remember looking at mum and dad crying and saying to them, 'I love you and I will come out of this.'"

Despite Sophia's honest admission, her mother still felt sad that her daughter was robbed of her teenage years because of her condition. "Sophia had never had a boyfriend at that time and she should have been thinking about school and going on dates, not going through something so heavy."

For now, CHD is on the back burner, and Sophia has other priorities that are keeping her busy.

Sophia, who turns 22 in August, is currently a communications major (with a minor in entrepreneurship and film) at the University of Southern California, where she's also a member of a sorority.

“I want to be an entrepreneur and run my own fashion and makeup line,” she told The Hollywood Reporter.

Sophia previously talked about her love for theater and the desire to become an actress, but she gave up on that dream when she realized how harsh the industry can be. However, she's still open to appearing in front of the camera if the opportunity arises.

She recently appeared as a guest judge on the Lifetime television show Project Runway, and last year, she and her sister's were chosen to hand out trophies at the 2017 Golden Globes Awards.

Lifetime

Miss Golden Globes is a Hollywood Foreign Press tradition that dates back to 1960s which selects a celebrity offspring to give away the coveted statuettes. It was sort of like a debut for the Stallone sisters.

Sophia also appeared alongside her younger sisters on the cover of Harper's Bazaar's April 2017 issue. From the looks of her Instagram, she also occasionally models alongside her sister, Sistine.

As for Stallone, he hasn't recently publicly spoken about the nerve-racking time  and his family went through all those years ago, but during one of his past interviews, he expressed gratitude to those who helped save Sophia's life.  

"My daughter had heart surgery and I saw this doctor and thought, ‘He has the power of life and death.’ That is my new hero," Stallone said.

Sylvester Stallone isn't the only celeb who's kid has turned their health struggles into their motivation for success.

David and Victoria Beckham's Son Refuses To Let Devastating Diagnosis Keep Him From Success

Raising children is never easy, especially if one suffers from a chronic condition. Parenting doesn’t come with a rule book, but that doesn’t mean they don’t do the best they can.

Even if you’re a celebrity, parenting isn’t any easier, as they still hold the expectation to raise their kids to become kind, respectable, and responsible adults. Sometimes there are struggles when their offspring get unruly, but other times the circumstances are out of their control, which in turn can make them feel helpless in caring for their child.

David and Victoria Beckham are no different, especially when they were faced with their son’s devastating medical diagnosis.

But let’s rewind on their story. Before the pair met, David saw Victoria in the music video for the Spice Girls’s 1996 hit song “Say You’ll Be There.” He was instantly smitten.

“That’s the girl for me and I'm going to get her! She's my idea of perfection,” David reportedly said to his former teammate Gary Neville.

David’s future bride had been aware of his existence too, as Victoria had been secretly following his career through various magazines.

"My wife picked me out of a soccer sticker book. And I chose her off the telly. It felt straight away like we'd always been meant to be together," David wrote in his 2003 autobiography.

The Beckhams finally met in 1997 after being introduced at a celebrity soccer match, and the rest is history.

Dubbed “Posh and Becks” by the media, the lovebirds tied the knot on July 3, 1999 and have since welcomed four beautiful children: Brooklyn, 18, Romeo, 15, Cruz, 12, and Harper, 6.

Living the picture perfect life, it would come as a devastating shock when their son, Romeo, was diagnosed with epilepsy.

Epilepsy is the fourth most common neurological disorder in the world, and affects people of all ages by causing seizures. There are several types of seizures one can suffer from, varying from being brief and nearly undetectable to long periods of vigorous shaking.

According to CURE Epilepsy, an estimated 65 million people suffer from epilepsy, with 3.4 million being American.

The neurological disorder can result in physical injuries, including broken bones. Sufferers often have to take medication for the rest of their lives, but even then on rare occasions, it can prove to be fatal. Sudden Unexpected Death in Epilepsy (SUDEP) is an unexplained complication, where no other cause of death is found. It can occur at any time.  

World Health Organization

Following the revelation of Romeo’s epilepsy diagnosis, the Beckhams have taken extra precautions to ensure their son’s safety.

In 2006, it was revealed to the public the young Beckham suffered from the neurological disease, when Victoria lashed out at paparazzi for taking flash photography of Romeo - which has the ability to trigger a seizure.

Prior to the announcement, the Beckhams had been seen frequenting hospital, but no one knew why, until one fateful day when the family arrived at Heathrow Airport in Longford, England.

As they were being bombarded with flash photography, Romeo, then four, began having a violent reaction. While Victoria initially tried to shield his eyes from the bright lights as they made their way to their waiting car, the paparazzi only continued to persist.

The situation took an ugly turn when one ruthless photographer pressed his camera to the car’s window and began to take snaps. The flashing lights made Romeo scream out in terror, which forced Victoria to reveal her son’s condition.

Shielding him once more, she yelled: "Leave him alone. He's got epilepsy. All that flashing will start an epileptic fit. You can't do that!"

The photographers were from media outlet Splash News, and once the media outlet’s owner, Kevin Smith, found out about Romeo’s epilepsy diagnosis, he vowed to refrain from taking flash pictures of him.

"No picture is worth putting a child's life in danger. Now that we know Romeo has epilepsy I will not be authorising any of my photographers to take flash pictures of him. I think this is absolutely the right thing to do and I hope other agencies follow suit," Smith said.

Fortunately, Romeo hasn’t let his condition rule his life.

Since Victoria’s 2006 announcement, the paparazzi acknowledged Romeo’s condition, and have done the right thing by ceasing to take his picture with flash photography.

Romeo hasn’t let his epilepsy be the focal point as his life as he’s already accomplished several feats before the end of puberty.

In 2014, he was the star of a Burberry’s first Christmas campaign, and was credited for helping the high-end fashion company boost their sales in the U.S., Europe, and the Middle East. He even helped make up for failing sales in Hong Kong following the city’s pro-democracy demonstrations.

The following summer, Romeo made headlines when he participated in the children’s race at the London Marathon.

Accompanied by his entire family decked out in “Team Romeo” t-shirts, Romeo completed the three mile race for children aged 11 to 17 in a speedy 18 minutes and 54 seconds.

He was congratulated on social media by Victoria and Brooklyn, who proudly declared his younger brother had raised for raising £6,000 (about $8,500) for UNAIDS and 7 Fund.

He also briefly followed the footsteps of his soccer star father, as he was once a prospect at Arsenal's youth academy. However, he decided to devote his attention to other endeavors, and give up the sport. Luckily, David took the news relatively well.

"The other day Romeo turned around to me and said he didn't want to play football anymore," David told Radio Times. "Part of me was devastated but part of me was relieved too.

He’s since been seen taking a shining to tennis, with champion tennis player Grigor Dimitrov even saying he has “a lot of potential.”

“Romeo, he's a very talented kid. I think he hasn't played tennis for that long, but he sure showed I think a lot of potential,” Dimitrov said.

It’s amazing what children can accomplish when they don’t let their conditions define them!

When this next popstar received his son's devastating diagnosis, he learned just how important the role of the parent is in advocating for their child.

Backstreet Boy Opens Up About His Son's Rare Illness And The Hardest Part Of Parenting A Sick Kid

Brian Littrell is known as one of the members of one of the most successful boy band of all time. The Backstreet Boys have been around since the 90s, and haven't seemed to let up at all. They perform in countless concerts every year, and continue to make every 90s kid smile with their classic songs.

Even though they have been busy over the last 20 years, many of the band members have found time to have a family. Brian Littrell met model and actress Leighanne Wallace during the video shoot for "As Long As You Love Me" and they quickly fell in love. By 1999, they were engaged, and then in September 2000, they were married.

The two welcomed their son Baylee Thomas Wylee Littrell on November 26th, 2002. However, when his son turned six they found something that would connect the young boy to his dad in a surprising and unexpected way, a way no parent would want.

Brian Littrell was diagnosed with a heart murmur when he was born. It lead to several complications over his life, including an open heart surgery in 1998.

Brian's Condition

His heart murmur was incredibly dangerous. "I was born with what they call a VSD, which is a ventricular septal defect," Littrell explained. "It is known as a heart murmur. Fast forward in my life when I was five years old. I was in the hospital for two months, where I was clinically supposed to die. I had a zero percent chance of living. I had a bacterial infection called bacterial endocarditis. Again like I said a zero percent chance of living."

He managed to survive, but it wasn't the end of his troubles. "It is only by the grace of God that I am here today. We fast forward to when I was 18. I was a Backstreet Boy. I left home to pursue the entertainment world," Littrell said. "At 23 I had open heart surgery to repair my VSD. So as we talk about faith and as we talk about our journey in life being a heart patient, and being a man of faith and the church; it has always been my stronghold in life. It has always been my compass. God has walked with me every step of the way as a I am heart patient even today."

Bop

After managing to survive this traumatic event, Littrell was able to use his fame for good. He was able to found his own charity to help others suffering from similar issues called the Brian Littrell's "Healthy Heart Club" For Kids. It is  a non-profit organization that assists families who have children with heart conditions with their medical, financial, and practical help.

However, never in a million years did Littrell think that he would need to worry about his own child's heart, but unfortunately, that was the unique connection that he and his son shared.

Baylee's Mysterious Condition

They had been concerned about the potential of Littrell's condition being passed down genetically, but they didn't see anything at the start. "That was our first concern when my wife and I did sonograms and checking on our son, who now is 13 years old," Brian explained. "Life happens quickly. That was a major concern of ours. His pediatrician and doctors knew of my preexisting condition as well as being a heart patient my whole life."

However, even though it didn't present right away, Littrell knew that he had to stand up for his son. "Being a father is kind of a helpless situation. You are truly in God’s hands because you can’t do anything about it. You can only be an advocate for your child."

Baylee was rushed to the hospital when he was six years old, but his symptoms were confusing even the doctors. The young boy came in with a high fever, a full-body rash, swollen lymph nodes and blisters covering his entire throat.

The doctors tested for so many things including strep throat, hand, foot and mouth disease, allergies, and many others. “You feel helpless as a parent because you’re relying on people who are educated about these things,” Littrell said of the situation.

Leighanne, Baylee's mom, couldn't just sit by and wait. She had been watching these symptoms slowly crop up over the span of a couple months. Leighanne explained that the rash first appeared in October and her young son would occasionally complain about a sore throat, but it was never serious. "I think his body was fighting off this disease," she said.

When it escalated, it did so quickly. A high-grade fever appeared and the swelling in his throat felt like pecans under the skin. He was first diagnosed with strep throat but the tests proved that wasn't the case.

The symptoms he was presenting were not pointing to anything that made sense, but Leighanne requested a test that the doctors hadn't initially wanted to do. "I said, 'before we go, I would love an echocardiogram.'"

It was this instinct that helped save her son's life.

A Mother's Instincts

Leighanne had to demand the test because the doctors didn't suspect that his heart was the problem. She was so glad that she trusted her gut. "Listen to your instincts and hopefully you're wrong, but maybe you're right," she said.

With her husband's heart condition in mind, she requested the echocardiogram. She had looked up her son's symptoms, and while they weren't the typical presentation of the heart condition known as Kawasaki Disease, it was the only thing that fit.

Kawasaki Disease is hard to diagnose as it often presents in different ways. However, it primarily affects children under five, and usually those from Japanese or Korean parents.

But the echocardiogram revealed what Leighanne had suspected. Baylee's heart was inflamed. “We didn’t know what we were dealing with until we found his coronary artery three times the size it should be," Brian Littrell said.

“Baylee was finally diagnosed with [atypical] Kawasaki Disease,” said Littrell. “We would like to stress [atypical] because Baylee did not have textbook symptoms of any of the viruses they thought he had.”

The heart condition was scary, but they were lucky to have found it when they did. They were able to treat the swelling, and after just a few weeks he was starting to see improvements.  “He received an IVIG, which is a treatment to bring down the inflammation in his coronary arteries,” Litrell said. “Baylee will be closely monitored for the next 6-8 weeks by a Pediatric Cardiologist to see if the treatment was effective."

“Baylee’s cardiologist thinks he’s going to make a full recovery and be able to do whatever he wants,” a family friend said after they were out of the hospital.

Years later, Baylee has moved on from the scary incident. He has actually become incredibly successful in his own right, taking after his father and heading to the stage.

Baylee's Future

Baylee may have had a rough start, but he has moved on from his hospital stays and has discovered a love of music, just like his dad.

When Baylee was only seven, he performed at his parent's vow renewal ceremony. When his dad went on tour with the Backstreet Boys and New Kids On The Block, a then nine-year-old Baylee stepped on stage and opened for his dad's popular band to a huge audience.

When he was 13, Baylee landed a role in a Broadway musical called Disaster! and he actually credits his autoimmune disease for teaching him how to be strong and brave.

“It gave me a lot more strength and courage,” Baylee said. “I remember I walked out of the hospital in a Batman costume. I was like, ‘I walked out of here and I survived this and everything is going to be amazing.’”

Baylee plays twin siblings in the show, and has to switch in and out of a wig to play the sister, even singing as two characters. “It was really hard at first,” he admitted. “It's just so fun and so fast-paced, going back and forth. It’s the best number of the show, I love it.”

He's grown up a lot since his time in the hospital, and is excited to see where his life will take him. He's even contemplating following his dad into the music business, although he'd rather do it without a band by his side. “I'd like to follow in his footsteps -- solo,” Baylee joked.

His dad is proud of all the things he is doing and calls him an "old soul." But he  does have some words of advice to pass down. "It comes down to hard work. It comes down to work ethic and spending time on things that you want to be valuable in life," Littrell said. "I spend a lot with my family. I spend a lot time with my career. Those are the things that I want to continue to be successful at. Those are the things that I am teaching Baylee. He tells me that it is hard work. I say that you have to spend time. You got to put that time and effort in. He is doing well. He is like a little pro."

Obviously, his son is on the path to bigger and better things, but it's all because his parents advocated for their son's health, and realized that his condition could not be ignored. Parents know their kids better than anyone and in this case, the fact that they wouldn't give up save their son's life.

When one of the biggest names in music received heartbreaking news about his son, he didn't hesitate to put his entire career on hold indefinitely.

Grammy-Winner Got A Call Every Parent Fears: His Son Had Cancer

Michael Buble and his wife, Luisana Lopilato, have gone through some tough times together.

Buble and his family had a traumatic few months after his young son, Noah, was diagnosed with liver cancer.

While Lopilato was filming a movie in Buenos Aires, Argentina, their four-year-old son fell ill. She was told by doctors that her son had contracted mumps and had swollen glands. Noah’s pediatrician disagreed with the diagnosis and thought that it may be an infection. After prescribing the child antibiotics, they decided to do a full examination to be on the safe side.

"They ran lots of tests, blood analysis, everything," Lopitalo emotionally recalled. "When they did an ultrasound, they said they found something in his stomach. [Doctors] told us they weren’t sure what it was, but it was a tumor."

At the time Buble was in England, which left the 30-year-old mother to make an emergency decision.

"I couldn’t speak to him by phone. So I got on a flight," she explained. The family has a rule that if anything were to happen to them, they would travel to Los Angeles, which is the halfway point.

"Without speaking to Mike I took the flight," she continued, adding the Buble had a friend in LA who was an oncologist.

Fortunately the family was able to reunite that same day.

Once he received the devastating diagnosis, the 42-year-old “Haven’t Met You Yet” singer immediately cancelled all of his upcoming gigs, including a performance at the BBC music awards in December 2016.

The four-year-old was then thought to be going through chemotherapy in a attempt to battle the disease.

"We know he will. The time to start a long and very difficult treatment has come but it's got to be done. They say children are normally strong to put up with chemotherapy and my nephew is a warrior," Lopitalo’s sister said.

During the whole ordeal, the family tried to remain positive.

"There are things that happen in life that make you realize that the most important things that you think are important, really aren't," the actress shared. "The most important thing is to have faith and to be strong. There are nights that I still don't sleep and I pray to God because it's still a long process and the worst is over. Thank God."

Hepablastoma is a rare form of liver cancer that affects children under the age of five. It causes a tumor to form in the cells of the liver and if it’s not caught early enough than it can spread to the lungs.

Thankfully things seemed to look up for Noah and his family.  

While Noah’s recovery process is slow and will be filled with regular check-ups, the family remains optimistic.

“But we are very happy. We are looking forward to thinking about the future, to seeing our children grow,” Lopilato said.

In February the iconic musician gave an update about his son’s condition.

“We are so grateful to report that our son Noah has been progressing well during his treatment and the doctors are very optimistic about the future for our little boy,” Buble told Us at the time. “He has been brave throughout and we continue to be inspired by his courage.”

Buble and his wife are also parents to their two-year-old son, Elias.

"Being a parent is a massive blessing, and I don't want to get all new age-y about it but it's given me perspective. It's allowed me to understand deeply that what I do for a living – creating music and art and getting to be part of a fragrance or a movie – is my job, it's not what defines me. What defines me is I'm Noah and Elias' dad," Buble said.

A source close to the family says that Noah is now “doing very well,” and that “he’s an energetic little boy!”

The source also reveals that the whole ordeal has brought the family closer together.

"Events like this put everything in perspective,” they said.

Mirror.co.uk

After taking nearly a year off work, Buble is also said to be back to his old self.

"[He’s] in a really good head space right now," the source said.

With Noah’s positive prognosis the source said, “Luisana has been back on set. And Michael is ready to think about going back to work.”

But still family is top of his priority list.

“Michael is keeping his workload light so he can spend as much time as possible [with his family],” the source said.

Buble shared a cute moment about how he and his wife keep things light and funny in their marriage.

“When your wife visits you on the set of your new music video and leaves love notes for you in your trailer,” he wrote on his Instagram post.

Buble is set to be hosting the 2018 Juno awards in his hometown of Vancouver, Canada.

"This is really important to him. It's not only a chance to celebrate Canadian artists, but it's also right in his backyard, since he lives in Vancouver," the source explains, sharing that he'll be very hands on with the show.

The singer also announced that he will be performing in two shows, one in Ireland and one in London this coming summer.

Wireimage

His family, however, will still be coming first in his life.

"[Buble] doesn't want to be on the road for a large chunk of time, but he's eager to get back on the stage," the source said.  

In an interview shortly before diagnosis, Buble shared how his family and career affect his life.

"I will fight for balance, and if one suffers, we know which one will go – it won't be my kids. I just love them way too much," he said.

For this next actor, his role as a doctor and his real life collided when it became clear something was terribly wrong with his newborn daughter.

He Is A Famous TV-Doctor, But His Daughter's Real-Life Case Would Hit Him Close To Home

Does art imitate life or does life imitate art?

Dr. Henry "Hank" Lawson, a young emergency room doctor, is no stranger to solving medical mysteries, but the actor who plays him, Mark Feuerstein is.

The Royal Pains actor just seems to always be making the right decisions, saving and changing lives from left-to-right in the medical drama, but it's when his real life seems to be turning into a episode on the hit television show that his whole world turns upside down.

USA Network

The 46-year-old actor tied the knot with his longtime girlfriend and television writer Dana Klein in 2005, and soon after welcomed their first daughter, Lisa, and a year later, Frisco, their son.

It wasn't until September 2009 that they welcomed their third child, a baby girl named Adelaide, endearing called "Addie".

Things seemed to be going well, until their newborn daughter started behaving very strangely...

Zimbio

At only six weeks old, Addie was a handful. She could barely gain weight because she refused to eat, constantly crying to express her agitation. Mark desperately tried to chalk up a reason for why his baby girl was acting this way, wondering if she may have colic, a pain in the abdomen caused by gas or undigested food.

The new parents noticed that Addie's condition was not improving, and a few months later, they took her to the doctor, who diagnosed the baby with reflux.

Mark and Dana were relieved to hear that their infant was suffering from a common condition that affects more than half of all infants.

Bumps n Baby

It seemed to make sense, Addie was irritated because the food in her stomach was making its way up into the esophagus; however, her condition continued to take a turn for the worst.

A time of confusion

"I lived in the naive hope that our doctor was right when she diagnosed Addie with reflux," Mark told Heart Insight. "When Addie didn't immediately start to improve, I remember telling my wife that the [medicine they gave Addie to treat reflux] just needed time to take effect."

Along with her difficulty to eat, Dana recalled that Addie was sweating heavily and would scream and cry after feedings.

Now that Mark and Dana had a hunch that Addie's condition was far more serious, they didn't give up their search to find answers.

“I’ve never been more aware of how little I know playing a doctor than I did learning about this,” Mark confessed to People.

Addie continued getting check ups until finally one doctor detected something wrong, a diagnosis that would change her life forever.

The doctor hooked Addie up to an electrocardiogram machine, which detected irregularities with her heart.

"To see your child sweating, yet lying still, because her heart is working overtime, you can imagine the feeling of helplessness,” Mark told People.

This wasn't something to be taken lightly, so Mark and Dana rushed their baby girl to Children's Hospital in Los Angeles, and after many tests, it was discovered that Addie suffered from anomalous left coronary from the pulmonary artery (ALCAPA). In layman terms, her heart couldn't pump enough blood to the rest of her body.

The condition occurs when the left coronary artery, which is supposed to connect to the aorta, connects to the pulmonary artery instead. This heart anomaly can be mistaken for colic, food intolerance, reflux, and bronchiolitis. Other symptoms include restlessness, above-normal sweating, panting, a heart murmur, and poor growth.

"The condition was so rare it wasn’t on our radar at all," Mark said.

iHeart

The fatal heart congenital heart defect affects less than 1 out of every 10,000 births in the United States. It causes low-oxygenated blood to go directly to the heart muscle, rather than going to the lungs first.

"In hindsight, I wish we had done a pulse oximetry screening for newborns, but it’s not a standard procedure, and wasn’t even suggested when Addie was born," Mark said, referring to a bedside test that determines the amount of oxygen in a baby's blood.

While Dana visited her daughter every day, Mark was busy shooting episodes for Royal Pains in New York, and had to fly home on the weekends.

Dana told People that all the medications Addie was on was making her delirious: "She cried for 12 hours straight. I remember climbing onto the gurney and saying to her, ‘You’re so strong. You can do this.'"

During this time, both parents had to make a difficult decision.

Searching for the light at the end of the tunnel

In March 2010, Addie had a risky open-heart surgery.

"I was very scared," Dana admitted to Heart Insight, and Mark was equally as worried.

"Being in New York, shooting Royal Pains, while Addie was in Children's Hospital was the hardest time of my life," Mark confessed. "It's already a helpless feeling when your child is sick, but add to that being three thousand miles away and it's torture."

KDHamptons

Luckily, the couple had a great support team, which included Dana's mother and aunt who flew out from the east coast to care for their other two children.

"I had many friends who dropped off dinners for us when Addie was in the hospital, and it was so nice because it made cooking dinner one less thing to worry about," Dana said.

iHeart

While everyone tried to stay positive after the surgery, Addie wasn't showing signs of improvement. Her heart muscles seemed like they needed more time to recover, and the thought of having their baby girl go through additional surgeries worried them sick.

"When you don't get good news for days and weeks on end it's dispiriting," Mark said. "It was one step forward and two steps back, and that was hard to take."

The family was praying for a miracle, hoping that their infant daughter could finally get better and go home.

Road To Recovery

In May 2010, Addie underwent a second surgery to fix her mitral valve, which was the reason why her heart muscles weren't able to contract normally.

"We were told the odds of her surviving the second surgery were 80/20 and the odds of him having to use something other than her own tissue, like an artificial valve, were 50/50," Mark said.

Fortunately, the second surgery was successful, and Addie was able to spend her first birthday recovering at home.

"We are so blessed that he was able to fix the valve with her own tissue and that within a week to two weeks after surgery, Addie started going off her meds," Mark said. "Our gratitude for the life of our little miracle, Addie, knows no bounds—we are forever indebted to the staff at Children’s Hospital in Los Angeles."

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Now, you'd never guess that Addie had life-changing surgeries, but she still needs her regular check ups.

"She’s doing great," Dana said. "She still goes in to see the cardiologist every six months, and we’ve explained that she had surgery when she was a baby, but that she’s all better now. We tell her the scar on her chest is her line of courage."

“She fought the whole way. What obstacle in life will be hard for her? ‘I failed a pop quiz? Too bad! I had a heart defect!’ Nothing can touch her now," Dana told People.

All these famous parents show just how important the love of family can be when things seem to be at their darkest.