HARWINTON, Conn. (WTNH)-- A two-year-old Harwinton boy is battling a little known genetic disorder. It's so rare he is only one of 11 reported cases in the world.
When Finn Straub was born, doctors said he would not live beyond his first birthday. He turned two in September. But the rare syndrome has left him weak.
It's precious time for which his parents are thankful.
Smiles from two-year-old Finn Straub, it's a good day for visitors.
"He has proven to be an amazing fighter," said Lauren Straub, Finn's mom.
Finn has Microcephaly-capillary Malformation Syndrome or mic-cap syndrome.
"His brain is severely underdeveloped. His head is smaller," said Lauren Straub.
It's a rare genetic disorder, one of 11 reported cases in the world. Cross toes are distinctive features.
"Also he has capillary malformations which are, they almost look like little red birthmarks," said Straub.
First time parents Thomas and Lauren Straub now care for him at home 24/7. There is no treatment or cure for the progressive disorder.
"We learned how to take care of him. He teaches us what he needs," said Thomas Straub.
"We were able to feed him with a bottle, he took a pacifier. I was lucky enough to breastfeed him for to four to five months. He cried," said Lauren Straub.
Now unable to cry out and move, interactions are through his facial expressions.
"And he works really hard to give you that and so its very meaningful to us if I come into the room and say hey buddy and he can just slightly turn his head and crack a corner with a smile. That's a homerun for me that day," said Thomas Straub.
Not expected to live beyond his first birthday, Finn is now under hospice care.
"We're doing everything we can to keep him as comfortable and as happy as we can for as long as we can," said Thomas Straub.
Nurse Samara Ambrosia helps care for Finn who battles seizures and respiratory issues.
"So he requires frequent suctioning, position changing, chest percussions to make sure we can clear the secretions he produces," said Samara.
Still, it's not stopping Finn from being a two-year-old.
"There you've got smiles for your Hulk Man, yes you do," said Thomas Straub.
Life with Finn has brought blessings.
"There are a lot of people that we know now have come into our life because of Finn, who we would never have met or known otherwise," said Lauren Straub.
As you can imagine the medical costs caring for Finn is mounting. Lauren has quit her job to be his primary nurse and Thomas works overtime to help pay the bills.
For more on Finn's story, go to Friends of Finn Facebook Page.
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