Valentina Allen, 1, of Howard Beach was born with hypoplastic left heart syndrome and has already undergone two major heart surgeries, but, with new technology, she is expected to live a long and healthy life.
Decked out in a pink tutu, a shirt emblazoned with her name, and a nearly perpetual smile, Valentina Allen celebrated her first birthday last week – a milestone in anyone’s life, certainly, but particularly so for the young Howard Beach girl who is bravely battling a rare congenital heart defect.
Born Feb. 15, 2013 with hypoplastic left heart syndrome – a birth defect that leaves her with a severely underdeveloped left ventricle – Valentina’s story is one of the power of human resiliency. Since being born a little over one year ago, she has undergone two major heart surgeries and faces one more in a year or two – after which her family and doctors expect her to live a normal, primarily hospital-free life that could even include physical feats that those of us with a fully functional heart would be hard pressed to accomplish.
“The oldest person with what Valentina has is 26 now – she was born when these surgeries first came out,” said Danielle Allen, who lives in Howard Beach with Valentina, her 2-year-old daughter Victoria, and her husband Ryan. “She has been a gymnast and is a skier – she lives a completely active, normal life.”
Over the past year, the Allen family has spent much of their time going back and forth between Queens and the Children’s Hospital of Philadelphia, where Valentina has undergone her two major heart surgeries. During this time, Danielle and Ryan Allen were able to take time off to be with their daughter and stay in a hotel near the hospital – but they stressed that they met many families who were not able to afford the same.
That is where a fundraiser this Sunday, Feb. 23, at 10 a.m. comes into play. The Allen family will donate the funds raised during the Lift-a-Thon and Cardio-a-Thon to the Children’s Hospital of Philadelphia’s social work department, which in turn helps families be able to stay with their babies during surgeries; to the hospital’s cardiac child life program – which aims to make children’s hospital visits a little more enjoyable with games, arts and crafts, and music; and cardiac research because, as Danielle Allen said, “hopefully Valentina will get to grow up, get married, have babies, and live a long, fulfilling life – which, if she was born 30 years ago, she probably wouldn’t have been able to.”
Gold’s Gym is located at 157-05 Cross Bay Blvd. The fundraiser is expected to last for several hours.
The fundraiser almost immediately follows Valentina’s first birthday – an occasion which Danielle Allen was, upon discovering her daughter’s defect, told may never happen. When she was 18 weeks pregnant, doctors told Danielle Allen that they couldn’t see the four chambers in Valentina’s heart. After sending the mother for a two-hour fetal echo, it was recommended to the 28-year-old that she should abort the baby.
Danielle and Ryan Allen decided to seek a second opinion and flew to Boston, where doctors told them the baby had a 75 percent chance of living until the age of three. Finally, the family went to the Children’s Hospital of Philadelphia, where medical personnel said they’d be able to perform three heart surgeries – the first at three days old, the second at six months, and the third at two to three years old.
Overwhelmed by this news, Danielle Allen said the news confirmed what she had hoped for more than anything: Her daughter had a chance at life.
Along with having hypoplastic left heart syndrome, Valentina also has heterotaxy, a congenital defect where major organs are distributed abnormally in the body; and asplenia – which means the little girl has no spleen.
“It’s overwhelming,” Danielle Allen said. “People will say, ‘You’re 28 years old – how are you dealing with this?’ I found the best hospitals. I didn’t care what it was going to cost me – I was doing this for my baby.”
Despite the two heart surgeries – as well as another surgery to correct where her intestines were placed – one would have a difficult time knowing such a little person has been up against so much.
“She’s a happy, happy baby,” Danielle Allen said. “She’s so happy and so easygoing. She’s amazing.”
The fundraiser will be held at Gold’s Gym at 157-05 Cross Bay Blvd. at 10 a.m. on Feb. 23. For more information, visit https://www.facebook.com/
By Anna Gustafson
