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Reese Sheane
Reese Kenneth was born in May of 2021 and lives in Miniota with his parents and two older brothers. Pregnancy, delivery and his first 4 months of life were smooth and uneventful. He was smiling, started rolling and was just a happy and sweet baby. When he was just over 4 months old, we noticed some unusual movements he was making and became very concerned. We quickly saw an on call neurologist and he was referred to Children’s Hospital in Winnipeg. After many tests and appointments, Reese was diagnosed with Infantile Spasms and Global Developmental Delay. His skills regressed and we were devastated to learn just how catastrophic this condition can be.
He didn’t respond to the main treatments used for infantile spasms, there was no physical brain abnormalities to explain the symptoms and later learned through genetic testing that he has a genetic mutation called SCN2A, which is the probable cause of this form of epilepsy for Reese. Recently he’s been diagnosed with Lennox Gastaut Syndrome and he is at risk of other seizure types that may be hard to control with medications. He continues to take multiple medications, has daily seizures and spasms, and has recently had an 11 day hospital stay at Children’s hospital where he had his G tube placed. Reese receives his medications and nutrition through his G tube.
At nearly 5 years old, Reese is nonverbal and non ambulatory but despite the challenges he faces, he is such a sweet, easy going little boy. He has two big brothers, Shaye (10) and Kael (7) who adore him and these boys have their own special ways of communicating with Reese and including him in daily activities. Reese loves to be outside and go swimming or on walks. His favourite place to be is home with his family.
Reese uses a standing frame at home as well as other pieces of equipment to make life easier for him. We will be making some changes to our home to make it more accessible for him and there will be future changes needed as he grows, such as an adapted vehicle with wheelchair access. Reese has great therapists who visit our home regularly and we still travel to Winnipeg for appointments often. Reese will start kindergarten in September!
Thank you for choosing Reese as a recipient for the Little Valley Jamboree 2026! We look forward to attending this event as a family!
Nathan Huhtala
Nathan is a 13 year old boy from Forrest, MB who has lived quite a life so far! He came into this world via emergency c-section 1 week early only weighing 4 lbs, 3 oz. When asked why his birth weight was low, they attributed it to IUGR (intrauterine growth restriction). After only staying in the NICU for 1 week, they discharged us to head home, as he was thriving.
When Nathan was around 7 months old, we started to notice some weird behaviour/movements with his arms/fingers and getting startled quite easily. After spending a night in the Brandon emergency room, they had thought Nathan might be having seizure activity. They made arrangements for us to go to HSC in Winnipeg to meet up with a Neurologist for an EEG. After 10 hours of sitting in a room, we were admitted to HSC for approximately 2 weeks. Nathan underwent many tests and procedures to determine what was happening.
We remember having the head of the pediatric ward stop by Nathan’s room after about a week of testing. They were close to narrowing things down, and were positive they had a diagnosis. He asked if Neurology had reviewed the MRI with us yet, and we stated no. He sat down next to us and said, what you are about to hear will be life changing for your family. He stated most parents would not stay together after a diagnosis like this, but he saw something in us that he didn’t often see. Grit and determination that no matter what, we would take the challenge together. As we started to cry, we heard words like moderate to severe brain damage, calcifications on the brain stem, seizure disorder, global developmental delay, microcephaly and hearing loss. Nathan’s official diagnosis is CMV - Cytomegalovirus. Over 85% of the population fights this virus, yet I contracted it while pregnant and passed it down to Nathan in utero unknowingly.
Nathan has undergone many surgeries over the years. From dental surgery, adenoidectomy, G-Tube surgery, and a double hip surgery during the middle of a pandemic! He continues to be followed by many specialists such as OT, PT, SLP, neurology, ophthalmology and audiology. We thought we were out of the woods with his hearing impairments, but unfortunately we found out this past may that Nathan now has profound hearing loss in his left ear.
Despite all the challenges Nathan continues to teach us more than we will ever be able to teach him every single day. He is absolutely loved by his little sister Tenley and family. Nathan is still a 13 year old boy at heart, and loves to be outdoors, fishing, camping and gardening! We will continue to ensure he is included in everything we do! He is such blessing.
We are grateful and very honoured to be a recipient this year.
The Huhtala’s
Justin, Jamie, Nathan & Tenley