Alena Galan and her mom look remarkably similar, and have voices that almost sound the same. So it’s hard to believe when you first see them that Alena was actually adopted by her mom, from Krasnoyarsk, Russia, when she was a young child.
The pair are one of the most endearing mother-daughter duos from TLC’s hit second series of sMothered, once you get over their seemingly bizarre rituals like playing tag round the living room — despite Alena now being aged 21 — and her mother “kissing her all up” like a puppy when she wakes up every morning.
The playing tag is actually something they first started when Alena was young to help her with movement and other issues which she suffered due to a condition she has, called Maroteaux Lamy Syndrome, also known as Mucopolysaccharidosis Type VI (MPS-VI).
“Those are remnants of her early beginning where she came to America from Russia at three and a half years of age,” Marcia says.
“She had little stamina, her height and weight were below average, she had poor motor coordination, poor range of motion and lots of colds. What became a ritual was running around the table every morning. She grew stronger and stronger and we continued to do it — we never forgot the beginning. Now, she catches me and tackles me to the couch.
“In terms of the puppy kisses — I always kiss her all up. To see her beautiful smile is like sunshine on a rainy day!”
Medics gave Alena just five years to live
When she adopted Alena in November 2001, Marcia was told her beloved new daughter was just like any other healthy, happy three year old. It was only after she took her home to New York that she found out Alena actually had the super-rare condition — with medics at the time saying there was little hope, and that she would likely be dead in just five years.
“I remember sitting there with my beautiful, adorable, smart little girl and hearing the words ‘mucopolysaccharidosis’ and thinking ‘supercalifragilisticexpialidocious’, then hearing ‘she is peaking and all her functioning will go down and lead a slow death within the next five years’.
“I sat there like a train ran over me. Married at the time, I called my husband, who was not there, and there was utter disbelief. This was the perfect child I waited for my whole life for and she was going to be taken away from me.
“I was angry at everyone from her birth parents, to the Russian and American adoption agencies, to the doctors, hospital and God. I was in such shock. How could this be?”
However, in 2005 — three years after that fateful day at Montefiore Children’s Hospital in January 2002 — Alena became the first child in the northeast to receive the enzyme-replacement drug Naglazyme, given to her on the advice of their doctor, geneticist Dr. R. Marion.
The condition still affects Alena, and she has to have enzyme-replacement therapy for five hours each week, but she is now expected to live a long and full life.
“I am one of the more fortunate ones with fewer issues,” says Alena. “It only affects me in that I must have a weekly infusion for five hours to prevent any further damage to my body and luckily for me, the enzyme replacement has worked.
“I stand 4ft 3in tall and sometimes that gets in the way and can be frustrating since the average world does not revolve around my stature!”
“Other than that, I have compensated for everything else. I am focused, determined and future-oriented to go after my dreams and aspirations in entertainment.”
Alena majored in Marketing with a minor in Communication at Quinnipiac University and will complete her MBA this fall. However, her biggest love has always been singing.
She recently had to undergo surgery to remove nasal polyps, which has affected her voice, but she hopes that it will return.
‘Singing was a gift given to me for what was taken away’
“Singing is my passion,” she says. “It is what has always kept me going. We always said it was a gift given to me for what the enzyme had taken away. Everybody has something, but not everyone is as fortunate as me to have been given a voice.
“With that being said, losing my ability to sing was devastating. I am a survivor and I put all my energy into what I could do and succeed so I focused on those things. I live life to the fullest, making what is important count and not taking anyone or anything for granted.”
“I know I will sing again,” she added. “And I look forward to being that role model for others to give them the strength to never give up. There is always a reason for everything.”
Alena regularly tries to give back, by taking part in fundraisers and giving lectures. She also loves acting and being in front of the camera, and hopes to one day have her own TV talk show. Her ideal first guest would be one of the three artists that have served as her musical inspiration and who she would love to collaborate with if she ever got the chance.
“I have three artists [that I would most like to collaborate with] that are in a tie. Each has been part of my journey in developing my own artistic style. Miley Cyrus was my first inspiration and one I wanted to emulate. Her song The Climb became my signature song.”
“It’s about always climbing and being the best you can be. I even got a chance to sing it on the stage at Carnegie Hall.”
“I saw Taylor Swift at Madison Square Garden, and she mesmerized me back then. She has grown as an artist and person — a strong and great role model and I would so love to meet her and collaborate with her. I feel her genuineness and her passion as well. She could be my first guest when I have my own TV talk show!”
“Thirdly, the artist I would love to collaborate with is Adele. She is a powerful vocalist and that’s what I am about. As a person, I admire her ability to bear her soul through her music like me.”
Alena’s college years
Going to college was a huge step for Alena, but she says it was a stepping stone to her becoming more independent. It was also one of the first times she had spent prolonged periods away from her mom.
“I didn’t have a choice as my mother made it clear, I was going! I came home during breaks and in the summer before my senior year, I worked at CBS in the city and stayed with my aunts who lived close by. I learned to take public transportation and manage.”
“Yes, it was scary and at the same time exciting. My mother always taught me everything is scary the first time but then it gets easier. She was right.”
Marcia says that while it may seem like she smothers Alena in some ways, she just wants the best for her and has always done what she can to foster independence in her daughter, and to help her achieve her dreams. That included Alena spending several summers at the Institute for the Musical Arts in Massachusetts when she was younger, and then going away to college.
“I encouraged and insisted Alena go away to college,” says Marcia. “I love her dearly but she had to fly and self-help. I also hoped she would make true friends (which she did) and find her way (she did!).”
Marcia insists Alena needs to start driving
Despite wanting her to be more independent, Marcia also says on the show that she is worried Alena might not be completely ready for an entirely independent life.
One of the main issues — which plays out in dramatic scenes on this week’s episode of sMothered — is Alena’s aversion to driving, which Marcia believes is holding her daughter back.
“Alena is a capable young woman and I have given her the tools to be independent and function independent of me. She has several close friends and a circle of people that love and adore her.”
“The only issue we really have is her driving since where we live or where she may end up living, you need to drive. She actually got a driver’s license in high school. She realizes that driving her around is something she should be doing. That would take a lot of pressure off of me and make her self-sufficient.”
Although she clearly doesn’t like the idea, Alena admits that her mom is right about the driving. “I know deep down that even though it scares me, I need to take that leap toward independence. It is a work in progress! My mama wants to help me along in this venture and although it is a bumpy ride, we will get through this together in one piece.”
sMothered airs Sundays at 10/9c on TLC. In case you missed them, make sure to check out our interviews with some of the other mother-daughter pairings from the show — including Sunhe and Angelica, Mary and Brittani and Laurie and Sarah.