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Beating the Odds- A boy and his family fight like warriors while facing sickle cell

“Yesterday is history, tomorrow is a mystery, and today is a gift…that’s why they call it the present.͟–Master Oogway, from Kung Fu Panda

Last year, Elijah, who had never had a room of his own outside of a hospital, received a welcoming bedroom makeover.

KMBC 9 News, in its Inside Pediatrics Episode 6, provides a glimpse into the Hematology & Oncology Clinic at Children’s Mercy. Scroll ahead to 4:38 for a story about Elijah. (at 4:38)

According to Kung Fu Panda, “A dragon warrior never gives up.” This is the mantra by which 10-year-old Elijah Daniel and his family live. Daniel was born with sickle cell disease but was cured when he received a bone marrow transplant at age 5 from his big brother Isaiah.

Even with the rare perfect match, Elijah’s body rejected the transplant. Contracting Graft Versus Host Disease (GVHD), a complication of the transplant, he spent the next four years in and out of the hospital. ͞He was a Grade 4 on a scale of 1-4. We had no reason to believe he was going to live,͟ said Elijah’s mom, Nakia Wilson-Daniel. In Elijah’s case, the new bone marrow cells attacked his digestive system.

“Prognosis for someone with this level of Graft Versus Host Disease has been really poor. He has beaten those odds. By all rights, he should have died based on the numbers”,͟ said Dr. Doug Myers, Pediatric Hematologist-Oncologist at Children’s Mercy Hospital, where Elijah has been treated.

Elijah spent five months in the hospital, fighting GVHD in late 2012 to early 2013. At other times over the next few years, he was in the hospital for two to three months at a time as he dealt with inflamed intestines that caused scarring preventing him from eating; multiple surgeries to correct short bowel syndrome; intestinal rehabilitation to help with nutrient absorption. When you consider how terrible the cure for sickle cell has been for Elijah, you wonder if it was worth it.

But Nakia will tell you it is. In 2008, Essence, the 13-year-old daughter of Nakia and Jesse Daniel, Jr., died from complications of sickle cell disease. Sickle cell affects everyone differently,͟ said Nakia. Unknown to the family at the time, Essence was suffering from pulmonary hypertension. An embolism ultimately took her life. Meanwhile, just a year before, at age 1, Elijah suffered acute chest pain. Having a sibling with the same disease, automatically increased Elijah’s risk for serious health issues and mortality rate,͟ said Nakia.

A shining light

Big brother Isaiah was a complete match with Elijah for a bone marrow transplant, that cured him of sickle cell disease.

[beforetransplant] and [warrior] Elijah before the bone marrow transplant, and after, being a dragon warrior, as he fights GVHD.

While still grieving the loss of their daughter, Nakia and Jesse were dealing with the ever-present reality of Elijah’s health concerns, as well as how to help Elijah and Isaiah deal with the trauma of her death. ͞I know that Isaiah won’t ever forget his sister, and Elijah won’t ever really know her,͟ said Nakia. It was in the midst of this that they learned about bone marrow transplants as a possible cure for sickle cell disease.

Sickle cell disease is a genetic blood disorder caused by the presence of an abnormal form of hemoglobin. These hemoglobin molecules tend to aggregate after unloading oxygen forming long, rod-like strictures that force the red cells to assume a sickle shape. Sickle red cells cannot squeeze through small blood vessels and the organs are deprived of blood and oxygen. This result can be pain and damage to organs. Sickle red cells have a shorter life cycle than normal cells also causing anemia.

No doctor ever told Nakia and Jesse that bone marrow transplant was an option for treating sickle cell disease; they learned about it while watching an NBA game. During the broadcast there was a story about a player who had a son with sickle cell who was hoping to try bone marrow transplant. However, only 20-30 percent of patients who need a transplant have a matching sibling.

“In my wildest dreams, I never expected a match. When the nurse, who had known our daughter Essence, called with the news that it was a complete match, I almost fell to my knees. After all of the tragedy, I never expected to get good news,͟ said Nakia. At the same time, they were hesitant, knowing they were asking a lot of their other child, but Isaiah was adamant. ͞This gives us an option for another life for Elijah”, he said.

“Sharing stories about Essence and Elijah comes at a cost; it’s painful to relive those moments for Nakia and Jesse. ͞I’m a very private person, but people need to hear these stories to stay hopeful. Nothing good comes from an attitude of defeat”, said Nakia.

Both Nakia and Jesse knew they carried the trait for sickle cell, but when they were newlyweds, they weren’t thinking about that. Testing while Nakia was pregnant confirmed that Essence had sickle cell disease. ͞After Essence was born, it was a hard decision to have other children,͟ she said. When both parents carry the trait, there’s a 1 in 4 chance that their children will contract the disease. Son Isaiah also carries the trait. New Beginnings

[DadSonBonding] Elijah and his Dad share a special bond.

After four years of missing school because he was too ill and immune-compromised to attend, Elijah is now a fourth grader in the Raytown School District. He likes school and likes being with other kids, but the challenge of getting caught up is overwhelming for both Elijah and his parents.

It’s also a time of new beginnings for Jesse, who left the workforce for three years to care for Elijah, while Nakia, who carried the insurance, stayed on as a social worker in the school district where they live. In August, Jesse returned to work as a contract specialist for the military. In April, he was away from home for four weeks attending training.

“His dad is his world”, said Nakia about Elijah’s relationship with Jesse. “They do everything together—playing video games, kicking the soccer ball, talking, and watching Kung Fu Panda at least 2,000 times.͟She says the two have memorized whole scenes from Elijah’s favorite movie and will act them out together. As trying as the years during his health crisis were, Jesse says there were also blessings. ͞The time we spent together bonding as father and son has been good for both of us”, he said.

Last October, Elijah was taken off the pain management pump, which he had been on since January 2013. “We had a huge party at Children’s Mercy with the nurses, doctors, and family”, said Nakia. For a kid who has missed out on so much—birthday parties, sleepovers, school events, even eating cookies—this was an exciting day for Elijah, who told people he’d had a birthday party at the hospital.

Heading back to work and school means a new routine for the family. “Among our biggest challenges are rationing his time out of school and our paid time off from work for doctor appointments, and finding time at home to reinforce school lessons,͟ said Nakia. But Nakia says Elijah is a quick-learner, disciplined, and a perfectionist. “That’s a double edged sword, but this is a kid who hasn’t had a lot of control in his life.” While he might come across as a little obsessive-compulsive, Jesse says Elijah is ͞likeable with a great moral compass and respect for authority.͟ His mom echoes that saying “He’s funny, passionate, and empathetic of others. He believes in standing up for what’s right, and is sometimes ornery.”

Taking a stand for education During the years that Elijah was home- or hospital-bound, his parents knew he wasn’t getting the normal social and educational development he needed. “It was an extremely stressful time. We had to be solely focused on keeping him alive, meanwhile, you only get so much time [to focus on other things]. Now we are shifting gears to get him the education he deserves”, said Nakia.

During those years, there was “isolation from his peers and fewer opportunities for socialization andlanguage development”, said Jesse, who did his best to teach him the basics without any real support from the school district. This is a sore point for Nakia, who works in education and understands the system. The Missouri Department of Elementary and Secondary Education has a rule that parents must un-enroll their child from their home district any time they will be hospitalized for three days or more outside of that district, and enroll them in the school district where the hospital resides. For a critically ill child, who was back and forth from the hospital on numerous occasions, this was a ridiculous situation.

“I refused to do it”, said Nakia, but that also meant that Elijah’s home school district wasn’t required to provide a teacher. They did provide online materials and virtual learning tools, but without tangible, consistent one-on-one learning, there are lots of gaps in Elijah’s education.

There’s no clear cut solution to this. Children’s Mercy funds a teacher to serve children who are hospitalized there, but that might mean 40-50 kids to one teacher. Then when home-bound, the district provided a teacher to visit twice a week. But those efforts fall far short of the education healthy kids get being in school five days a week.

Now that Elijah is back in school, the problem hasn’t gone away. ͞He’s still not getting what he needs,͟said Nakia, who said she left parent/teacher conferences in February infuriated. She hopes after demanding a new IEP meeting that calls for an instructional assistant in the classroom that they will see an improvement. They’ve also hired his previous home-bound teacher as a tutor to help outside of school hours.

Granny-isms- Isaiah and Elijah with Woody Woodpecker on a trip funded by Make-A-Wish® Foundation.

“Nothing beats a failure but a try. That’s what I call a Granny-ism,͟ said Nakia, who credits the strong women in her life, including her grandmother, with giving her the foundation to get through these struggles. She says her grandmother was full of these words of wisdom. ͞Hope comes from staying prayerful”, she added.

Meanwhile, Jesse’s advice for other parents: “Have a network outside of your immediate family. My wife is fantastic, but you also need a friend you can vent to”, he said. He also recommends becoming as studious as you can regarding your child’s condition. “YouTube was a great resource. I watched videos about normal functioning of a system or part of the body. This helped me formulate questions to ask doctors about my son.”

“Doctors are people too. Use common sense and don’t be afraid to challenge the information you receive.”

“We have been blessed to have great people, companies, and nonprofit organizations support us in many ways”, said Nakia. Some of those groups are The Bone Marrow Foundation, Uriel E. Owens Sickle Cell Disease Association of the Midwest, The Short Gut Foundation, The Keenan Colburn Foundation, Design Gives Back, Make a Wish Foundation, and Give Kids the World.

“We have great relationships with our doctors and nurses. We work really closely with our home health agency with medication orders/deliveries and the nurses who complete his dressing changes”, said Nakia.

Remembering Essence

Essence Daniel died at age 13 from complications of sickle cell disease. A stroke at age 5, and difficulty breathing, were the only obvious symptoms of her disease. While Essence didn’t have the pain often associated with the disease, monthly blood transfusions helped to reduce the number of sickle cells in her blood. However, this was not enough to alleviate the pulmonary hypertension she was living with. Doctors attributed the shortness of breath to asthma, not the true underlying cause.

“The disease did not define her. She didn’t let it limit her. She believed she could do anything”, said Nakia Wilson-Daniel. Essence, who loved to write, dreamed of either being a screen writer or an ObGyn doctor. And she had a few hidden talents—music and drama.

As a young child, she took a few piano lessons, but it wasn’t something she followed through with. Yet years later, she sat down at a friend’s keyboard and started playing. She also starred as Lucy in a musical rendition of Charlie Brown. After the performance, her mom was astounded at her vocal skills. “I had no idea she could sing like that”, said Nakia.

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