By Sue Wambolt, Contributing Writer
Shrewsbury – After an uneventful pregnancy nothing could have prepared Dan and Kate Brown for the premature birth of their daughter, Ella, and the hemophagocytic lymphohistiocytosis (HLH) diagnosis that followed. Born a month early via emergency cesarean section Jan. 11 with a rash and an enlarged liver and spleen, Ella was transferred from the NICU at UMass Memorial Medical Center in Worcester to the NICU at Boston Children’s Hospital. After an extensive battery of tests and weeks of treatment – including chemotherapy – it was discovered Feb. 21 that Ella does not have HLH but, rather, an extremely rare genetic mutation on a gene called NLRC-4. With little known about this genetic variant there is minimal information available regarding treatment and really no information regarding prognosis.
While Ella remains in the hospital, her parents have made the Boston Ronald McDonald House their home away from home. Kate is taking time off from work at the New England Center for Children. She spends her days by Ella’s side and uses down time to research genetic mutations and educate herself on the treatments, cures and prognosis associated with them. Dan just returned to work at Karl Storz in Charlton with an adjusted schedule allowing him to be at the hospital every day.
Kate’s stepmother, Karen Sliwoski, describes Ella using the familiar quote “and though she may be little she is fierce.” And, like Ella, she said that Dan and Kate are warriors.
While Ella’s prognosis is still undetermined, it is likely that she will remain in the hospital for several more months at least. Right now her body is struggling with the changes made in her treatment. Testing is done regularly with some results showing a slight improvement in some areas – though nothing significant yet as it is early in this phase of her new treatment.
With so much unknown about Ella’s condition and treatment it is fair to say that she and her parents have a long road ahead.
With the loss of Kate’s income in addition to the accruing medical bills and cost of living expenses (allowing Dan and Kate to continue to stay in Boston) the financial strain on the Browns is mounting. In order to help ease the strain, Ella’s grandparents have organized a fundraiser to take place Saturday, April 22, at St. Mary’s Parish, 20 Summer St., Shrewsbury. The event will run from 5 to 9 p.m. and will include a pasta dinner, basket raffles (including a dog care basket, emoji basket and spa basket), a silent auction (including several dinner/Hanover Theater packages and sports memorabilia) and music. Tickets can be purchased for $20/adult and $10/child.
For more information or to purchase tickets, visit www.ellabrown.org or contact Karen Sliwoski at 508-395-0053 or Janet Bergeron at 508-847-1436.