Eileen y Roberto son una pareja joven ( Venezolanos ) que han pasado por mucho en los últimos años... Hace 3 años y medio su unica hija Neelieth fue detectada con un raro sindrome que necesitaba de un transplante de médula ósea, ella al ser detectada solo duro con vida 28 días... Al pasar el tiempo tienen a un pequeño bebe llamado thiago, es muy hermoso y dulce el nació el 24 de enero de este año en el estado de la florida, lamentablemente el tambien nació con esa extraña enfermedad llamada Sindrome de griscelli tipo 2, esto se da por la Unión de un mismo gen de sus padres que al unirse hacen este choque y nacen con este extraño caso... Su unica salvación es un transplante de médula ósea ya que su sistema inmune es muy bajo y su cuerpo no tiene la capacidad para combatir cualquier tipo de virus, o bacteria que en el puede ser mortal... Se habla del transplante de médula ósea a sus 6 meses de edad ya que no se puede esperar tanto tiempo por los riesgos que esto trae, ya pasaron por eso con su pequeña hija!!! Thiago nos necesita si en algo pueden colaborar sería de muchisima ayuda para poder llegar a la meta y que el gane esta batalla tan dura qye esta por venir... De ante mano agradezco por al menos tomarse su tiempo para leer esta pequeña historia.
Are you familiar with the terminology “rainbow baby”? The rainbow symbolizes the happiness and new beginning after the storm of previous loss or hardship entering motherhood.
Little baby Thiago is most definitely a rainbow baby. His story and his family’s has touched my heart. I will do my best to recount it to you.
Roberto and Eileen are a young very loving couple. They met when Eileen was in high school, 13 years ago and have been together since then. They are from Venezuela, and arrived in the USA this past Christmas. Eileen’s aunt, Patricia, was my neighbor 20 years ago when we lived in Gulf Breeze while building our house. I was in awe of Patricia who was raising triplets, while I was learning the ropes of being a mom with just one child and finding it already challenging.
Roberto and Eileen have had to live through 2 terrible tragedies already and their future as Thiago’s parents is a challenging one, demanding them to be very strong in many regards.
I’m ashamed to admit I did not know much of Venezuela’s political climate before I met this couple, but reports of the living conditions are awful, poverty is the norm, the population is hungry. Needless to say, in that state, the country cannot provide proper medical care to its people. Roberto and Eileen had their first child, a beautiful little girl, Neelieth, 6 years ago. When she was 4 she started getting sick, she spent a lot of time in hospitals. After numerous testing, the doctors at the time thought she had a very rare congenital illness called “chediak higashi syndrome”. She passed a year later shortly after she turned 5. After this adversity, Roberto’s dad, who owned a little convenient store, was kidnapped and murdered. The killer is in jail, but has made threats to attack Roberto and other members of his family. They are not safe and are closing their little family business and fleeing Venezuela. In the midst of all this grief, Eileen became pregnant, the odds of her having a baby with the same disease as Neelieth were 25%. Given what they’ve already endured and the situation in their country, Patricia insisted she delivered her baby here in the USA, where they would receive proper care should this baby be affected by this syndrome. Thiago was born in Sacred Heart on January 24th, nearly 4 weeks premature. He, like Neelieth before him, has this rare condition, which the doctors here believe is the Griscelli Syndrome Type 2. At barely just a month old, Thiago is already in the care of an oncologist, a hematologist, an immunologist, to list just a few of his specialists. He has been given the best of care here and will most likely continue his extensive treatment in Gainesville in a short few months. He will first need a 3 months round of chemotherapy to prepare his little body to receive a bone marrow transplant. There are many complications possible, and still so many unknowns, but they are grateful to be here in our great country equipped with the latest technology and medical care available to give Thiago the best chances. They’ve had so much pain already, but meeting them, I was surprised to encounter so much love and joy. They are young but have the wisdom of those who have lived a long life and know sorrow. Leaving their country they have lost everything they owned, but I suspect that is of no baring to them, only their little Thiago matters. They have been staying with Patricia, and both have their 6 months visa, which will expire in the beginning of the summer. Aside from the hardship of their new baby’s health condition, they are facing many trials:
Eileen understand most english, but both need to learn to speak it (they are starting an english program)
Although their son is American, and can live here, they have to apply for a green card in order to live here with him and give him the best chances of survival and treatment. I know, from personal experience, that this is not an easy feat. They have a lawyer now helping them, but things are moving very slowly.
Until the whole legal immigration process has been initiated, Roberto can’t have a temporary work permit, allowing him to sustain his family with an income. For the moment, they are relying on their relatives, living with Patricia until they can provide for themselves. Roberto is very skilled in many fields, but his specialty in in car mechanics.
It isn’t yet decided when they will need to take Thiago to Gainesville, so they still can’t apply to stay at the Ronald McDonald house there, but how could they afford to rent a place for months? It is crucial for them to get their green card and work permit, but they can’t start working to earn money, they would be violating the law, risking a failure in getting their paperwork. Should they not be granted an extension of their visa, or a green card, they will need to leave the country come summer and Thiago would go into foster care…
Their road ahead is not easy, they need all the help they can get, financial, legal, housing in Gainesville (if they can’t secure a spot at the Ronald McDonald house), a job when they are allowed to work… comfort for the pain of their baby’s medical journey… so much! Our community has been so kind to them already, Eileen was given a wonderful baby shower, they are still overwhelmed by everyone’s generosity. I spent a day photographing sweet Thiago in Patricia’s home, wearing gloves and conscious about germs and this little angel’s fragile health. We hear sad stories everyday and feel sorry, and then you meet a sweet young couple who has already so much history and heartbreak. You want to make it better for them, life has been very unfair, you want the whole world to help them. Please share this story, feel compelled to visit and participate in their “gofundme” page. They were so humble, so sweet, their broken heart swelling with love and hope for Thiago.
My parents had to live through a very similar anguish. As very distant relatives, they both carry a very rare genetic disease. I was lucky, but my little sister wasn’t and she passed just before her second birthday. My parents were broken, they couldn’t even bare to tell me Sabine had died. It took them 9 months to tell me on a Christmas morning. I can’t imagine the kind of pain Eileen and Roberto are bearing.
Roberto carries his heavy heart on his arms: on his forearms are tattooed the love for his children, and higher up you’ll find his father.
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