Tag Archives: Boston Children’s Hospital

Meet Charlotte

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“Our 9 month old granddaughter Charlotte Condon, daughter of Kim O’Kane and Christopher Condon was born with a very rare and severe genetic disorder called Hurler Syndrome or MPS1, in which her body doesn’t produce the enzyme it needs to break down specific sugars. This affects every aspect of Charlotte’s poor little body – literally […]

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Thank You Hilary & Children’s Hospital

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We can’t believe it has already been 16 days since we started this journey. Harken amazes us with her strength each and every day. Her new favorite toy is her butterfly cuddle bug! She falls asleep to the sweet lullaby each night. Thank you Hillary and Children’s Hospital for this special gift!!  

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Central Line = Success!!!

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Harken’s surgery for placing her central line went great! We move upstairs into our permanent room tonight! We love you Bear and are so proud of you!!!!

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The Big Day @ Boston Children’s Hospital!

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Tomorrow is the big day! We head into Children’s Hospital to begin her journey to recovery! Thank you for all the well wishes, prayers and support.

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2nd Infusion!

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Harken had her second round of enzyme replacement! The enzyme replacement therapy gives her a synthetic form of the enzyme her body does not produce! What a trooper!!!

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Harken begins her journey

Diagonsed February 2014 Age 11 months March 31st Admitted to Boston Children’s Hospital March 31st Enzyme Replacement Therapy April Chemotherapy Following chemotherapy, Bone Marrow Transplant

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