Emily is a 6-week-old baby girl who has a diagnosis of cystic fibrosis, chronic kidney disease and short bowel syndrome. Emily has been in hospital since birth and will remain here for at least the next 8-10 weeks. Emily is scheduled for bowel surgery in September. She will be discharged home on IV nutrition supplied through a central line. Her parents will have to be present in the hospital to be trained in her IV nutrition and line care, as well as CF teaching. Emily’s parents live locally with their 3-year-old daughter.
Due to current visitor restrictions, BC Children’s will only allow two visitors so parents are not able to bring Emily’s sister into the hospital. At times, both parents need to be present for training and in September dad will return to work. There is some extended family that can provide some childcare; however, the family has had to pay out of pocket for much of their childcare needs (especially since there has also been a recent death in the family, meaning that the extended family was unable to provide childcare as they had to leave the province).
As with all families who spend extended periods in hospital, there are many additional costs (gas, food, childcare). I have access to a fund for children with intestinal failure that can provide support for gas and food. On the family’s behalf, I am requesting support for this family on a short-term basis until they can be discharged home. Childcare for the next 10 weeks is estimated at approximately $3,000. The family is willing and able to put in about $1,000. We are requesting $2,000 to support with childcare for Emily’s sibling until Emily is ready for discharge.
“ Our family is the recipient of one of your amazing grants. First off I would like to thank you, the board and your donors so much for all of your time and generosity, it is so very appreciated! This has been an extremely turbulent time for our family. Your grant has eased our stress levels and helped keep a semblance of normalcy in our routine by allowing us to use our regular nanny over the Summer when I've been in the hospital with Em. We weren't expecting to need her because I'm on maternity leave, but since Emily's cystic fibrosis diagnosis and subsequent surgeries I've needed to live in the hospital. ”