Inspirational toddler destined to die due to facial deformities that left her looking like a ‘supernatural queen’ defies the odds to survive
An inspirational toddler who was destined to die due to the facial deformities that left her looking like a ‘supernatural queen’ has defied the odds to survive.
Soleannys Lugo, 34, defied advice to terminate little Helianny four-months into the pregnancy after scans revealed multiple problems that made her ‘incompatible with life’.
In the womb her brain, eyes and nose didn’t form properly, along with her having a cleft lip, clubbed foot and fused fingers.
She also suffered hydrocephaly, where fluid fills cavities in the brain, swelling the skull out of proportion and risking brain damage.
When Helianny was born it was believed she would imminently pass-away, but she battled on and now is approaching her third birthday.
The little girl whose birth defects left her looking like a ‘supernatural queen’ attracts stares and hurtful comments in public from being ‘ugly’ to told she should have been aborted.
Her parents alongside good Samaritan Maricel Sanchez Alfaro, from Miami, Florida, who learned of the little girl’s case through a relative, are fundraising to allow her life-altering surgeries.
Soleanny, from San Cristobal, Venezuela, said: “When they told me that Helianny was not compatible with life, I became very sad because I wanted to be a mother and I already felt she was a part of me.
“That day my partner and I cried a lot, we hugged and between tears, we decided to continue the pregnancy and leave everything in the hands of God.
“She had a cleft lip, her eyes were not formed, her nose was not visible, her brain was not completely formed, with a clubbed foot and hands without fingers.
“I decided to give her a chance to live and why not give this opportunity to this helpless being that without knowing her, I loved her with my soul and with all my heart.
“I would compare Helianny’s appearance back then to a ‘supernatural queen’ because she had a crown embedded in her head.
“The three protrusions on her head looked like a crown, she had no eyebrows, no eyelashes, very pronounced veins on her head that seemed to burst and pink skin colour in her eyes, where her eyeballs should be.
“Her nose was completely stuck to the skin with only two nasal holes, one very small and the other slightly larger. But even so I perceived her beauty then and still do to this day.
“She was born and survived in spite of her deformities, we decided to respect her right to life.
“I consider my little girl a true warrior of life, a fighter. A winner in all of the battles that she has had to fight.
“I believe that Helianny came to this world to teach us not to give up, to stop complaining about nonsense, to live one day at a time, to be grateful with what we have.”
Helianny was born via caesarean at 39-weeks, months previously her parents battled to prove she was still worth fighting for and was conscious.
Soleannys added: “From the beginning doctors diagnosed the non-compatibility of Helianny with life. They always recommended termination of the pregnancy.
“Even though we were told she was a vegetable, I assured them she was not because she kicked me.
“She responded to stimuli, when I talked to her she responded with kicks and she liked instrumental music, she moved a lot with all of this.”
Due to her multiple craniofacial deformities and water on the brain it wasn’t believe she would survive the day.
Soleannys said: “When I woke up I was in recovery and my baby was in another hospital unit, they had given her father holy water to baptize her and let her die in peace.
“The next day I went to where she was and when I saw her for the first time, I said ‘My Helianny is a warrior.
“I took her hand and told her, ‘If you’re still here it is for something big’ and rest assured that we will be here to support you and accompany you on this long road.
“I reminded her how much we love her and how important she was and is for us.”
Mum Soleannys and father Henry Buitrago, 30, were amazed to see their little girl had survived the night but with a long list of problems they knew the road ahead would not be easy.
She was cautious about revealing her to the world for fear of Helianny being ostracised and in public they have received criticism for their decision to let her live.
Soleannys said: “The first few days I did not want anyone to see her, while I was accepting what was happening. I did not want her to be seen as an alien or for anyone to pity her.
“A few days after I accepted that she was different and I accept it, I do not regret having her, I love her so much that if I had to remake the decision I would do it all again.
“Many people bless Helianny and wish a good future, we always appreciate that.
“There is also a minority that attacks me, saying that I was irresponsible to have continued with the pregnancy.
“They say that I did not think about the future of Helianny and that if I had not stopped to think what will happen to her when neither her dad nor I are here.
“I try to ignore those comments but of course I think about that, we live for today and take everything one day at a time.
“Nobody knows the future, meanwhile we will continue to work tirelessly so that Helianny can be as independent as possible.”
The family contend with cruel comments from strangers online and in person, but maintain they will not hide.
Soleannys said: “We have always tried to include Helianny in all of our activities and when we go to the supermarket there are many people who look surprised, some stare and others just whisper.
“Through social networks I’ve been told many awful things, like why I didn’t have an abortion, that she came to this life to suffer, that she had to die, that she is a horrible thing.
“On one occasion we attended a party in a park that a friend organized and among the children present I was approached by a child and he asked us why she was born so ugly?
“He didn’t give me time to respond, a girl who was nearby and heard his comment told him “you are the ugly one” and she calmly said that Helianny was beautiful.
“Some will applaud our decision to bring Helianny to this world and others will judge us, “there is everything in the vineyard of the Lord.”
To date Helianny has had four surgeries, the initial two to drain the fluid from her brain, third her foot and another to work on her cleft lip.
Now the family are fundsaising for future surgeries that will allow her the best quality of life and repair some of the craniofacial difficulties that complicate her basic functions.
Soleannys said: “In the future I hope we can achieve the funds to perform the necessary surgeries.
“I dream of seeing Helianny walk, talk and be as independent as possible so that her only limitation is what she limits herself to.
“I thank God Every day of my life, Helianny has life, strength, tenderness, perseverance, optimism and she is an angel.
“Helianny came to this world on a great mission of life, to show us that we complain about so many insignificant things and forget to be happy.
“She teaches us not to give up and to fight but without ceasing to be an angel.”
To donate visit: www.gofundme.com/helphelianny
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