Meet Jubilee
Meet Jubilee
Dream: To visit Prince Edward Island and swim in the ocean.
Letter from a Dream Parent:
It took a long time for Jubilee (AKA Jubi) to get a diagnosis. I had to convince the doctors that she was sick. I knew it at two weeks old - she was so sick.
When Jubi was born, she wasn’t feeding normally. She was my seventh child, I knew something wasn’t right. She developed jaundice shortly after birth which they tried to credit to the feeding issues. They wanted to discharge me from the hospital but I knew something was wrong - I insisted on staying. After speaking to another doctor and googling her symptoms I knew what it was - Hirschsprung's disease - but nobody would test her.
On February 29th, at three months old, Jubilee finally had her first biopsy. It came back inconclusive. I had to call every day until doctors agreed to do another one.
She was finally able to get another biopsy in the spring, and Hirschsprung's disease was confirmed. She was seven months old. Hirschsprung's disease is a condition that affects the large intestine (colon) and causes problems with passing stool. The condition is present at birth as a result of missing nerve cells in the muscles of the baby's colon.
Since her diagnosis, Jubilee has had so many tests, procedures, and surgeries. Whenever she gets a cold or an ear infection, it directly impacts her bowels. This can require doctor visits, but here in Manitoba caregivers are trained to fix certain bowel complications under the guidance through emails and phone calls with our surgeon, who is amazing. Jubi also has to receive daily enemas right now. In the future, she'll likely have some kind of port put in so her enema can be done through her appendix. And maybe when she's older, she might choose a colostomy.
On top of Hirschsprung's, Jubilee is also has dilated cardiomyopathy, which is another rare disease. It’s stable right now and she is monitored regularly. She’s been through so much at such a young age. She still has a long journey ahead of her.
We are so lucky to have had incredible support along this journey. Our church family has been amazing. Every time Jubi’s been sick, they’ve taken some of our kids out to the park, they bring supper, and they’ve always been there for us. We couldn't have done it without them. We’re also really good friends with Monica Smith, from Aunt Monica's Attic. She is the one who encouraged us to reach out to The Dream Factory. And now we have Jubi’s Dream to look forward to.
“We are so lucky to have had incredible support along this journey. Our church... Monica Smith, from Aunt Monica’s Attic... And now we have Jubi’s Dream to look forward to.”
Jubilee’s Dream Come True
Her favourite thing is beaching and water, so she would like to go out east, like to Prince Edward Island, Nova Scotia, and New Brunswick to see the ocean! She wants to swim in the ocean. She loves water. She's a total water baby. Jubi also loves hiking, traveling around, seeing new things, and she is a history nut.
We can’t wait to bring Jubilee’s Dream to life! To find out more about how you can help make Jubilee’s Dream come true, check out the first-ever Dream Book!