Blood Donations are Key to Daniela’s Success

Daniela Ciriello’s start in this world wasn’t an easy one. Daniela lost her twin sister in the womb and had a tough start in life, suffering from what her parents first thought was colic and abdominal problems. Little did they know things would only get worse for their little girl before they got better.

“I remember Daniela always being fussy from day one,” said Dan Ciriello of Southington. “We mistakenly believed it to be GI related. She was on a ton of different medicines to battle constipation and eating issues.”

But what appeared to be a GI issue, was actually something much different. Daniela had a life threatening condition that was caught in the nick of time.

“We ended up at Connecticut Children’s through a referral by our birth-to-three consultant. Our pediatrician completely missed the symptoms and diagnosis,” said Ciriello. “Daniela was seen by Dr. Sayej who was so compassionate and caring. He requested a full blood panel on Daniela and several other tests. That same night we got a call telling us to take Daniela to the Emergency Department immediately! The doctors couldn’t even believe she was conscious because we found out her hemoglobin was so low.”

“She was close to heart failure and we didn’t even know it. Her spleen and liver were completely swollen and enlarged. If not for Dr. Sayej’s thoroughness we may have lost Daniela that night,” recalled Ciriello.

1-12-16-2“I will never forget the day Daniela showed up in my exam room. When I first saw her she looked ill. Her parents were rightfully anxious and concerned about their daughter,” said Wael Sayej, MD, Gastroenterologist at Connecticut Children’s. “When I got her blood results back that night I became even more worried. I knew we needed to be aggressive with the management of her illness.”

Turns out, Daniela was born with a chronic and deadly blood disease called Beta Thalassemia Intermedia. Although the condition is manageable, it is life changing and will require numerous doctors’ visits, blood transfusions and therapies throughout her life. “It obviously hurts and scares us all, but it also brings everyone closer. She’s at Connecticut Children’s several times a week, so it really affects out schedules, time and finances, but the entire staff has been amazing,” Ciriello said.

Currently, Daniela receives blood transfusions every 3 weeks and will likely need a splendectomy by age 6. Even so, she handles every procedure like a trooper and is feeling so much better these days. “It’s like we have a new kid. She’s gained weight and is walking and talking and eating like she should have been all along,” said Ciriello. “She has basically caught back up to other kids her age even though she has this condition.”

“Even though Dr. Michael Isakoff is Daniela’s physician, I have continued to follow her case and have worked with dietitians to increase Daniela’s caloric intake to help her gain weight,” said Dr. Sayej. “She has done very well since her diagnosis and her weight is now normal for her age and size.”

“The bottom line is when a child does not look well, we have to trust our clinical judgment and trust parental instincts,” Dr. Sayej continued. “Doing the most basic test led to getting Daniela the proper care she needed. I try to treat every child that I see as my own.”1-12-16-3

The Ciriello’s recently created “Daniela’s Dream for a Cure,” a nonprofit foundation to raise awareness and funds for her treatments.Not only that, they are also Blood Drive Coordinators and have held many successful blood drives since September 2013.

“Blood donors are truly heroes and save lives, like Daniela’s,” concludes Ciriello. “We will do anything to get more people to donate. Daniela has such a way of touching people and reaching them, it never ceases to amaze us.”

 

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