Share. Connect. Love.

Little Lyla ♥

On April 4th, 2016 at 7 months old Lyla Rose Edgington was diagnosed with a rare, progressive genetic disorder called MPS Type I or Hurler Syndrome. She's hoping to rece[...] read more

LATEST JOURNAL ENTRY - 2017-07-26T03:46:41Z

Day +365 - One year BMT birthday!!

It's been one year since Lyla received her bone marrow transplant!!! What a long, but amazing journey it has been!! The feeling of happiness and gratitude today is unexplainable!

We have been such a happy family the last few months! Lyla has been weaned off all her transplant meds and her immune system is getting stronger everyday so we have been able to take her out and about lots. She started walking a few months ago and can't get enough of it! She's also a social butterfly and will take any attention she can get!

We elected not to take Lyla back to Minnesota and are doing all her one year Transplant/disease checkups here in Phoenix at the Children's Hospital. So far, all aspects of Lyla's body look superb!! We hope this is a good sign for the years to come!!

We had the privilege of sharing Lyla's story at a local hospital last week to help raise awareness for cord blood donation and for the delivery nurses to meet a "real life" cord blood recipient. It was such a special day and Lyla was on fire! She absolutely loved all the attention and especially being called a superhero (see photo)!
For the presentation, I prepared this slideshow video. We hope Lyla's story will reach hearts across the world and help save even more lives!

Or you tube search "little Lyla stem cell"

We will stay in touch with occasional Lyla updates on this blog over the years! :)

Lots of love,
Helen, Steve, and Little Lyla

Stay in the know. Sign up to receive email notifications the moment new Journal entries are posted