THe story of Maura
09-09-2013, 03:38 PM
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THe story of Maura
Maura's name is: Maura Juliet Mongan. We live in Oregon.
Her genetic disorder is called Mucopolysaccharidosis 1 or MPS1 or Hurler's Syndrome. She was born with it and at 11 months old, we were given her life sentence. She had to have an immediate bone marrow transplant (in which she received cord blood donated by a lovely family in Australia) at 13 months of age. These children must have a transplant by 2 years of age or it will not work.
A bone marrow transplant includes chemo therapy where she lost all of her hair. It has grown back quite a bit now, only 10 months since it all fell out. She is healthy today but will deal with life long issues such as bone deformities and surgeries and we must monitor her heart, eyes and other organs closely.
She has been a very lucky, brave and courageous little girl through this process. She will have surgery next week to have her adenoids removed and her ears drained as part of her condition as well. I will attach a photo of her here, maybe that will help you with picking colors for Dolly number 161. (This was her while going through transplant)
Thanks to all of you who read this.
(Above letter from Maura mother, Amber Mongan
Her genetic disorder is called Mucopolysaccharidosis 1 or MPS1 or Hurler's Syndrome. She was born with it and at 11 months old, we were given her life sentence. She had to have an immediate bone marrow transplant (in which she received cord blood donated by a lovely family in Australia) at 13 months of age. These children must have a transplant by 2 years of age or it will not work.
A bone marrow transplant includes chemo therapy where she lost all of her hair. It has grown back quite a bit now, only 10 months since it all fell out. She is healthy today but will deal with life long issues such as bone deformities and surgeries and we must monitor her heart, eyes and other organs closely.
She has been a very lucky, brave and courageous little girl through this process. She will have surgery next week to have her adenoids removed and her ears drained as part of her condition as well. I will attach a photo of her here, maybe that will help you with picking colors for Dolly number 161. (This was her while going through transplant)
Thanks to all of you who read this.
(Above letter from Maura mother, Amber Mongan
Last edited by patricej; 09-09-2013 at 11:47 PM.
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