Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.
Ella was born on 1/11/17 at 5:56pm by emergency c-section. She was born with a rash, an enlarged liver and spleen and other complications requiring frequent blood products. On 1/26/17 she was transferred to Boston Children's Hospital with a diagnosis of HLH. After a never-ending string of tests and weeks of treatment, including chemotherapy, it was discovered the Ella has an extremely rare genetic mutation on a gene called NLRC-4. See the journal entry updates for more information!