Fundraisers helping young Moose Jaw boy battling rare brain disorder

Fundraisers are taking place to help the Hodnefield family after their son Wells was diagnosed with the very rare brain disorder MPPH (Megalencephaly, Postaxial Polydactyly, Polymicrogyria, Hydrocephalus) Syndrome.

When his mother Chaydin was 20 weeks pregnant with Wells, an anatomy scan could not see a portion of Wells’ brain. Chaydin, along with her husband Lane, was asked to come back for subsequent scans.

Read more:

• Kids overcome hospital anxieties through play in Child Life Zone
• New pediatric specialist welcomed to Jim Pattison Children’s Hospital

Chaydin went back at 27 weeks pregnant and the doctors still could not see part of the brain that they were looking for and noticed some abnormalities. The Hodnefield family was then referred to a fetal medicine specialist in Regina.

“We went, had an MRI, and they recommended that we do an amniocentesis to figure out what was going on,” Chaydin said.

The family didn’t receive the results from the amniocentesis until Chaydin was 39 weeks pregnant, a week before she was due to give birth.

Wells believed to be 76th case of MPPH Syndrome worldwide

The Hodnefields were told their son was diagnosed with a very rare genetic condition, MPPH Syndrome. It’s believed that Wells is the 76th case of MPPH Syndrome worldwide.

MPPH Syndrome is a rare disorder that affects the development of the brain, causing an overgrowth of the brain and head.

Chaydin said some of the characteristics are that Wells’ head is a bit bigger than normal and his brain has more folds in it.

“Basically, it causes epilepsy. It’s called polymicrogyria and hydrocephalus syndrome, so he had a little bit more fluid on his brain,” Chaydin said.

Wells was born at 41 weeks by traumatic delivery and spent four days after being born in the Neonatal Intensive Care Unit where baseline tests took place.

“We didn’t really know what to expect. We had seen some cases through social media of kids with MPPH Syndrome. Some were walking, some were talking, some weren’t. So, we didn’t really know what our life was going to look like. We just rolled with the punches,” Chaydin said.

Chaydin explained that it has been difficult to navigate because the disorder is so rare and many medical professionals have limited knowledge about it. She said they learned a lot by connecting with others through social media and reading studies about Wells’ condition.

She added it has been a lot of advocating on their own behalf. For instance, she knew Wells’ condition made him at risk of certain types of cancers.

In the fall of 2022, she asked their pediatrician if they could do a scan of his kidneys knowing that he was at risk for certain types of kidney cancers. A tumour was found on Wells’ adrenal gland and he was diagnosed with Adrenal Neuroblastoma.

“If we wouldn’t have advocated for him for that test, we wouldn’t have found that. So, we started with oncology and eventually his tumour was removed in September of this year,” Chaydin said.

‘Incredible gains’ from intensive physiotherapy

After that, it was a lot of visits to neurosurgeons and neurologists. When Wells was 11 months of age, Chaydin ran into a friend who has a niece with Cerebral Palsy. She asked how Wells was doing and Chaydin replied that he wasn’t meeting any milestones. The friend recommended looking into intensive physiotherapy.

Wells attended his first one-week intensive therapy session in Calgary just shy of his first birthday.

“We noticed incredible gains in his overall strength and awareness. It seemed like he grew so much intellectually and physically in that time,” Chaydin commented.

The Hodnefields continued with the intensive therapy sessions as they could afford considering there are no intensive therapists in Saskatchewan, and had to travel to Calgary and Arizona for treatments.

During these treatments, the Hodnefields were told about the importance of early intervention for children like Wells with developmental delays because their brains are the most neuroplastic between birth and age five.

“Doing all of these intensives is extremely beneficial for their development. When we went to Wells’ first intensive in Calgary he couldn’t even hold his head up. We would have to support his head anytime we were moving him,” Chaydin explained.

Now, Wells can hold his head up pretty well on his own, although he does get tired and it can fall back down. Chaydin said he’s gained a lot of strength and is able to sit up with support and has shown big gains in the last two years of therapy.

Next stop treatment at Denver’s NAPA Center

The next step is taking Wells to Denver at the NAPA Center for intensive therapy treatments.

Getting into the NAPA Center is a difficult task as patients are chosen through a lottery system. Lane and Chaydin put Wells into the lottery last year, but he was put on a waitlist.

They put him back into the lottery this year and ended up getting two spots, one in January of 2025 and another in November of 2025. Both sessions are three weeks each.

“We didn’t get in last year, but we got in twice in 2025 so we are really excited about it,” Chaydin said.

The NAPA Center program is three weeks with four to five hours of therapy per day ranging from physiotherapy, occupational therapy, and speech and language therapy. They also have a neuro-suit therapy device, intensive feeding therapy, and communication therapy.

However, all of this therapy comes with a price tag. The NAPA Center program is not covered by insurance or any of the Hodnefields’ health plans, so it is all being paid out of pocket. Chaydin said the three-week sessions cost about $14,000 CAD.

Friends and family have stepped up with fundraisers to support the family during Wells’ journey.

“We are so grateful for everyone reaching out to try and support our little boy to get the treatment and therapy that he needs,” Chaydin said.

Wells’ aunties have set up a GoFundMe page to help the family with expenses and a rib night fundraiser is being planned at the Crushed Can on Dec. 5.

Read more:

• Kids overcome hospital anxieties through play in Child Life Zone
• New pediatric specialist welcomed to Jim Pattison Children’s Hospital