Isla Melvin
Isla is a 3 year old girl with a very rare genetic condition called TUBa1a. At the time of her diagnosis in 2021, there were only 200 known cases worldwide. The TUBa1a gene is responsible for brain development in utero. Because Isla’s gene didn’t function properly, her brain didn’t form properly. Isla has a brain malformation which has caused cerebral palsy, feeding difficulty, vision difficulty, low tone and global developmental delays.
Isla has a wonderful team of specialists in both Brandon and Winnipeg. This requires regular trips to Winnipeg for appointments at the SSCY Centre and the Children’s Hospital. Isla has also traveled out of province to seek additional therapy that isn't available in Manitoba. She has made significant gains following those trips.
Isla is sweet, goofy, happy and playful. She loves to army crawl to explore the world and recently learned to sit! She is quite determined and moves with impressive speed towards open doors or unblocked stairs. She is a wheelchair user and becoming more proficient everyday but her favourite thing to do is crash into walls. Isla loves tickles, playing in water, reading books, being around friends and family, eating cheezies and ketchup chips, and throwing things when she thinks we aren’t looking.
Isla communicates with signs and gestures and it has been so much fun this past year watching her world open up as we have learned how to communicate with each other. She loves music and dancing and will drop everything to start clapping when she hears “If you’re happy and you know it”.
Isla lives in Brandon with her parents and three siblings. She has an older brother named Henry, a twin brother named Oliver and a baby sister named Sophie. Isla is such a joy and we all absolutely adore her.
Evie Kerkowich
“Evie is Made of Magic”
We always knew Evie was made of magic, but it wasn’t until January 2024 that we saw this magic bubble to the surface.
Just a month before her 3rd birthday Evie was diagnosed with B cell acute lymphoblastic Leukemia (b-ALL). She began her treatment at Children’s Hospital in Winnipeg January 10th, 2024 where we stayed between the hospital and the Ronald McDonald House for about 33 days.
These were some of our toughest days, accepting our new reality, watching Evie undergo changes and side effects, being separated from her older brother Mack and feeling worried for our future. However, with a little bit of Evie magic and tremendous support from our family and friends we have a decent start into Evie’s journey to stay leukemia free.
For the next 2 years Evie will follow treatment cycles and maintenance along a “standard favourable risk” category for b-ALL. We know this will become just “part of her story” and around the time she turns 5, we will be officially through it. The roadmap in front of us requires frequent travel to Winnipeg, accommodations, treatments, and medications. This significantly affects our ability to carry on with our everyday working lives. With continued support and a little more magic, we hope to put this long road behind us.
Love towards Evie and our family has been radiating through all different sources. We have met and been taken care of by many amazing humans that work in pediatric care on the CK-5 Ward at Childrens Hospital, Cancercare and at the Ronald McDonald House. Countless friends, neighbours, co-workers and family have helped in tremendous ways.
We are forever grateful; this has truly made this awful reality a little bit easier.
When Evie is not at the clinic or in Winnipeg she loves to spend time outside riding her strider bike, playing at the park and in our backyard. She loves doing anything that her older brother Mack is doing and loves the dogs in her life fiercely. Evie loves Paw Patrol, Minnie Mouse and playing baby dolls. You can often find her gently putting babies to bed, or doing play-doh at the kitchen table.
Evie is the perfect blend of spicy and magic, she has made this journey easy on all of us as she handles each new day with bravery, positivity and smiles.
Thank-you Little Valley Jamboree!
Daphne Robb
Daphne was born a happy, healthy baby on June 27th 2022. At around 5.5months we noticed that some things had changed – she was no longer lifting her head during tummy time, she didn’t seem interested in her surroundings and seemed much more tired and irritable. Closer to 6 months we were told she was developmentally delayed. Soon after we noticed her doing some unusual movements that resembled a very exaggerated startle reflex. We called Q-doc, and within a few days, and a trip to Winnipeg for an urgent EEG, had a diagnosis of Infantile Spasms – a rare form of difficult to treat epilepsy that affects young children, and can have some devastating effects on their brain development. A few weeks later, after a genetic test, we found out the cause of Daphne’s seizures and developmental delay. She has a very rare genetic mutation of the KCNQ3 gene.
Daphne has been through a large number of medications trying to get the seizures under control, and continued to have Infantile Spasms until she was about 16 months, at which point we finally found the right combo of medications to treat them. We make frequent visits to the Children’s Hospital in Winnipeg to see her neurologist/epileptologist, as well as multiple specialties at the SSCY centre in Winnipeg. She also sees physio, speech, vision and occupational therapists here in Brandon.
Daphne has been through so much in her short life so far – lots of visits to the doctors and various specialists, surgery to place a G-tube as she is unable to eat orally, multiple hospital stays, EEGs, an MRI, an emergency flight to Winnipeg to treat Adrenal Crisis and then an ongoing adrenal insufficiency diagnosis, the list goes on and on. Throughout it all she has been so brave, and constantly surprises us by continuing to learn at her own pace. After originally being told she will most likely never walk or talk, and may never progress past an infant stage of development, Daphne has learned to sit unassisted, she can smile and giggle, she can roll over both ways, and once in a while she will scoot a little bit on her bum. She loves lots of kisses, and playing with any toy that spins!
Although there is barely any published information about Daphne’s rare genetic mutation and we have no idea what her future might hold, we continue to try to celebrate all the little things, and try our best to meet Daphne at her level. We try to focus on what she CAN do, not what she CAN’T do. She is a beautiful, happy, smart girl who continues to amaze us with what she is able to learn despite everything she has been through. She is our ‘little trooper.’
Daphne recently started daycare , and although her immune system has had a hard time adjusting to all the daycare ‘bugs’ she has been flourishing. She lives in Brandon with her mum, dad, older brother Theo, and 2 cats. We are lucky enough to have a huge support system including lots of aunties and uncles, cousins, grandparents and close friends. We plan to use the money raised by the Little Valley Jamboree to try some new therapies, particularly ABM, as well as any new assistive equipment she will need as she grows.