Early in her pregnancy, Alena’s doctors gave her the heartbreaking news that her baby wasn’t growing and developing properly. After months of testing, at 26 weeks she learned that her daughter would be born with kidney dysplasia, a condition that affects only about one in 4,000 babies. She was told that her daughter would need a kidney transplant but that there was no way to know whether it would be immediately after she was born or years later.

When Ariana was born on September 12, 2012 they didn’t know how sick she would be. The room was full of doctors waiting to step in if an emergency intervention was necessary, but, as it turned out, Ariana was born as strong and healthy as she could have been, given her condition.

“From very early on Ariana was fearless!” Alena says, smiling. As a toddler she hopped onto a new scooter and sped off at full speed—and when she fell off of it a few weeks later, knocking out a tooth, she begged her mom to let her back on it a minute later.  She was “pure energy from the start,” organizing kids at the park to get them to chase after her and demonstrating her strong leadership skills that would emerge as she got a little older.

Ariana has a deeply kind and creative side, too. She loves to hug and cuddle her family, showering them with unconditional love, and she’s attentive and caring with smaller children. At the small family daycare she attended until she was four years old she would make it her responsibility to look after the babies. Even then she would bring home art every day, and now there are seven of her paintings hanging in the family’s kitchen.

For years the symptoms of her kidney dysplasia were minor—there were medications she needed to take regularly and she was thirsty all the time— but Ariana was able to enjoy her childhood without worrying much about what lay ahead. “She’s always known her kidneys were special,” Alena said, but for her, “it’s always been in my head, every day.” She knew it was inevitable that someday Ariana’s symptoms would get worse and she would need either kidney dialysis or a transplant.

Sadly, Alena was right, and Ariana has started to show signs that her kidney function is deteriorating. Her mom says she has much less energy and she can’t run like she used to.  Her taste buds have changed, too, as the toxicity in her blood makes a lot of food taste metallic. Where she used to love pasta, rice, and Russian dumplings, she now has hardly any appetite at all.

Ariana will need a kidney transplant as soon as possible, and Alena says she’s right at the top of the transplant list. In the meantime, Ariana can’t afford to get sick—if her immune system becomes any more compromised then she’ll have to start dialysis immediately. She’s had to stop attending the after school program she loves and has lunch every day in her school’s nurse’s office so as to avoid contact with other sick kids. Even a slight fever could mean that she wouldn’t be able to have the transplant she needs so badly.

Even still, Ariana is as happy as she’s ever been, playing with friends in smaller groups and hanging out with mom at home. She’s even excited about the prospect of the surgery! “The doctor made it sound exciting and special, so I think she’s kind of looking forward to it,” Alena said with a smile.

After the surgery Ariana will have to stay at home for two months, and the money we’re raising with COTA’s help will support her during her recovery and every day after. She’ll be on expensive immunosuppressants for the rest of her life, and, even in the best case scenario, she’ll need another transplant every 8-15 years. The money we raise will help cover all the costs associated with her condition—from travel to-and-from Children’s Hospital in Boston and copays to the dialysis she’ll need after her surgery and later in life, too.

Alena is confident that Ariana will get through this battle exactly as she’s gone through the rest of her life—as an incredibly strong, brave, little girl. When this is all over Ariana wants to be a teacher someday, or maybe a doctor, or a ballerina or gymnast—all careers that would be a perfect blend of her athleticism and her nurturing spirit. As her friends, family, and supporters, we can’t wait to be taught, treated, and entertained by her!