Jackie Snider, Boston's mom says, "The doctors have explained to us that he will write his own book. There are only 7 other patients in the world who have what Boston has, him being the eighth."
Boston Snider is just a year old and has a rare form of dwarfism called Lenz-Majewski hyperostotic dwarfism. He also suffers from Cutis Laxa, a connective tissue disease that causes his skin to hang and affects all of his organs.
Boston is faced with daily hardships. Doctors are still unsure whether or not he can hear and Boston cannot take anything in orally.
Snider says, "Every morning we jokingly say he gets up for his morning breakfast of 10 syringes of medication. He takes breathing treatments every morning. And then in the afternoon he has to have medication. The same thing happens in the evening."
Boston's Pediatrician, Doctor Robert W Mills, Chief Medical Officer at Mercy Children's Hospital, says the few who have this rare diagnosis face significant challenges.
"They are all challenged from a growth standpoint that's number one. Number two they also have challenges from a cognitive standpoint. With that, as with the case of Boston, also develop seizures. They also have problems with their airways and the size of their airways." says, Dr. Mills.
But Boston has the best care both from Doctors and family.
Boston was born to Chinese parents in New York and adopted by parents in Bryan, OH.
Jackie and Tim have adopted 7 children all with special needs. Jackie also has grown children from a previous marriage.
Jackie says, "Three of our children at home have Down syndrome and the others have had some issues. But Boston is by far the most complicated and biggest challenge but he's worth it. They're all worth it."
Just one month after Boston was adopted; his family had a huge scare. It brought them into Mercy Children's.
"He just went in for an outpatient sedated echo. They put him under sedation and he coded. I was in the room with him and it was the most horrifying experience. I saw him from top to bottom just turn gray and he stopped breathing. It was the scariest position we have ever been in as parents." Jackie says.
It was there that Boston's family experienced the doctors and staff of Mercy Children's and the support they so much needed.
Jackie says, "I really can't say enough about Mercy Children's. They've become a family to us. There were some days I would just sit in his room in tears because we were so scared we were going to lose him. You just become overwhelmed."
Boston's mom says the staff is like family and the bond Boston and Dr. Mills share is extra special. She believes it has to do with Dr. Mills's personal experience.
"I take care of an awful lot of special needs families. I had a special needs child myself. It takes it to a whole other level as a Doctor when not only you take care of the patients but you have your own child with special needs. I think it made me more empathetic and compassionate than what I was prior to that."
Between Boston's hospital family and his adopted family, one thing is for sure, there is unconditional love. Boston will write his own chapter and this journey so far is just one chapter in his book of life.
Jackie says, "We are thankful for every minute we get to spend with him but it is very difficult not knowing what his future holds. We just love him one day at a time and let him be who he is."
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