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Emmy’s Journey to Overcome Cancer, From Small Steps to Miraculous Leaps

When Emmy Cole was 2 years old, her mother noticed her struggling to walk. She grabbed her cell phone and tearfully recorded Emmy wince in pain as she took only a few, small steps. She knew something was terribly wrong with her daughter. Immediately after, they came to Seattle Children’s in search of answers. Emmy didn’t walk the rest of the day.

They received heartbreaking news. Dani and James Cole, Emmy’s parents, faced the unimaginable reality of helping their daughter through a devastating diagnosis: cancer.

On April 13, 2015, Emmy was diagnosed with high risk neuroblastoma.

Watch Emmy’s story from the beginning, from small, painful steps, to miraculous leaps. Read full post »

Baby Gets New Heart Just Before Turning 3 Months Old, Celebrates Milestone Transplant for Seattle Children’s

At only 3 months old, Titus Sickles was brought back to life. Today, his family says they have a second birthday to celebrate: the day his new heart started beating for the first time.

“He’s a completely new baby,” said Rena Sickles, Titus’ mother. “He has a second chance at life now.”

In dire need of a new heart, Titus was listed for transplant at only 2 months old. Thirty days later, while Rena and her husband, Andrew, were leaving the hospital to go to dinner, they got a call.

“The call came and I just knew,” said Rena. “I looked at my husband and we just started crying.” Read full post »

Mother Donates Kidney to Save Her Daughter’s Life, Advocates for Donor Awareness

At 4 months old, Raegen was diagnosed with congenital nephrotic syndrome.

Early on in Raegen Allard’s life, her mother, Francisca Allard, noticed something wasn’t quite right with her beautiful daughter. Raegen would seem upset after she ate and her stomach was enlarged. She also had a bruise around her belly button, which worried Allard further. At 4 months old, Allard took her daughter to the emergency room closest to their home in Snohomish. They told Allard she needed to be taken immediately to Seattle Children’s Emergency Department. When they arrived they received unexpected news: they weren’t going home. Raegan was admitted to Seattle Children’s Neonatal Intensive Care Unit (NICU).

Raegen was diagnosed with congenital nephrotic syndrome, a kidney condition that begins in infancy and typically leads to irreversible kidney failure (end-stage renal disease) by early childhood.

“I didn’t know what to do,” said Allard. “It was like I was watching life unfold in front of me and I had no control. All I could do was hold her hand. It was a whirlwind.” Read full post »

Agatha’s Dream of Walking to Her Local Ice Cream Shop Comes True

On Saturday morning, 10-year-old Agatha Holloway’s dream came true. Photo credit: Katie McCullough Simmons.

On Saturday morning, nearly 50 people gathered outside of 10-year-old Agatha Holloway’s home in the east central Seattle neighborhood of Madison Park to support the little girl with an incredible dream and fierce determination.

Her dream was to walk to her local ice cream shop, a journey that until recently seemed impossible. Read full post »

Jack Finds Strength Through His Disability, Inspires Others

Jack Clark, 12, shows off his dance moves on skates.

Jack Clark, 12, was born to stand out. He excels in sports, lights up a room with his infectious smile, amazes bystanders with dance moves on skates, and walks with a gait unique to him – with a prosthesis covered in flames. Jack was born with a disability, but he’s never let it slow him down. From the wrestling mat, to the roller skating rink, he always finds a way to thrive in the face of adversity.

“Most people see my disability as a disadvantage, but personally I see it as an advantage,” said Jack.

Jack was born with rare conditions affecting both of his legs – proximal femoral focal deficiency (PFFD) in both thigh bones and fibular hemimelia in the left lower leg. Isolated PFFD occurs in about one in 50,000 children and fibular hemimilia occurs in about one in 40,000 children. Read full post »

Doctors Double the Length of Anna’s Arms, Giving Her Independence

Lisa went into labor expecting her daughter wouldn’t survive.

Lisa Booth was 40 weeks and 6 days into what had been a completely normal pregnancy when she received unexpected news during an ultrasound.

“Everything was fine at 9 a.m. At noon, I was told my daughter would be a dwarf. By 4 p.m., I was told she wasn’t going to survive,” said Booth. “I went home in a completely shell-shocked state.”

Hours later, Booth went into labor expecting the worst.

“Going into labor I was thinking she wouldn’t survive,” she said. Read full post »

Agatha Comes One Step Closer to Her Dream Come True

Agatha and her brother order ice cream at their favorite ice cream shop, Scoop Du Jour.

Nearly half a mile away from 10-year-old Agatha Holloway’s home is a quaint family owned ice cream shop called Scoop Du Jour. It’s her favorite ice cream shop, and she’s always dreamed of being able to walk there. But until recently, that journey was physically too far for her to walk.

Agatha’s declining mobility made walking long distances impossible, but today, thanks to Seattle Children’s Orthopedics and Rehabilitation Medicine teams, Agatha’s dream has come true. Read full post »

A Unique Heart, an Unlikely Friendship, an Inspiration for Others

Luke Smith was born with only one functional ventricle.

For many, Valentine’s Day is a day to celebrate love. For Jesse Smith, the day holds a different meaning. You can usually find her running a race, or sharing her family’s story to raise awareness for a cause that’s near and dear to her heart – her son’s heart.

Smith was shocked the first time she heard one in 110 babies are born with a heart defect. She didn’t know of anyone who had a child with a heart defect, until she was carrying a child with one. The day Smith and her husband were told they were having a baby boy, they also found out there was something wrong with his heart.

“It was devastating, especially because we truly thought we were simply finding out the baby’s sex that day. It was one of those moments that change you forever,” said Smith. Read full post »

Asher Pens a Letter of Gratitude to the Doctor Who Cared for Him and His Dad

Asher was born with Robin sequence, which causes a smaller lower jaw and the tongue to be placed further back than normal. These features tend to block the baby’s airway.

The same day Kirstin and Chris King found out they were having a baby boy, they also received some unexpected news.

“We weren’t anticipating anything out of the usual,” said Kirstin. “But the look on the doctor’s face told us something was wrong.”

The ultrasound images revealed their son’s jaw was visibly stunted, which left the family with more questions than answers.

“I remember going home and thinking, ‘What just happened?’” said Kirstin.

Kirstin described the experience as a whirlwind. Read full post »

Helping Kids With Cleft Lip and Palate Thrive

Cleft lip and palate is the most common condition Seattle Children’s Craniofacial Center treats.

Finding out your child will be born with a cleft lip and palate can be unexpected and distressing for many families. Plagued with questions, parents may wonder if their child will be able to thrive, have speech issues, or what their smile will look like. Dr. Craig Birgfeld, a craniofacial plastic surgeon at Seattle Children’s, enjoys being able to ease a family’s anxiety. At Seattle Children’s, he knows these families are in good hands.

“When patients come to see us they become part of our family,” said Birgfeld. “To me, the best part of our job is seeing these kids grow up and be completely normal kids. It’s hard to remember them as a baby with a cleft. That’s the true test, and one of the reasons we do what we do.” Read full post »