When Chaydin was 39 weeks pregnant, she and her partner Lane found out their baby boy, Wells, would be born with a rare genetic disorder that would severely affect his development and require ongoing therapy and specialist appointments.
Friends of the family Taylor Birkenshaw and her mother Nicole Birkenshaw have organized a Rib & Caesar night at Bugsy’s/Smitty’s in the Town ‘N Country Mall in Moose Jaw on March 16
The fundraiser is from 5 to 9 p.m. on the Bugsy’s side and 5 to 7 p.m. on the Smitty’s side for the kids.
Tickets are $20 each and can be purchased from Taylor at 306-230-2692 and from Nicole at 306-631-0542. There will also be a 50/50 draw and a raffle table.
A family GoFundMe set up for Chaydin, Lane, and Wells provides an alternative way to help for those that can’t make it to the fundraiser: https://gofund.me/3dc1634e.
“Wells was diagnosed with a genetic condition when Chaydin was 39 weeks pregnant. So, he’s about 15 months old now, and he’s not meeting any milestones,” Taylor Birkenshaw explained. “He’s only the 74th reported case worldwide with this specific condition, and it causes a lot of issues with speech delays, you know, other developmental delays, walking. … He’s over a year old and is still very fragile.”
Wells’ condition is called MPPH (megalencephaly-postaxial polydactyly-polymicrogyria-hydrocephalus), a developmental brain disorder that causes various complications. Wells spent four days in the Neonatal Intensive Care Unit (NICU) immediately after being born and continues to require a lot of care.
Wells’ care team includes genetic specialists, neurosurgeons, neurologists, ophthalmologists, oncologists, physiotherapists, occupational therapists, speech/language pathologists, and his paediatrician.
Every two to three months, Chaydin, Lane, and Wells must travel for MRIs and ultrasounds. Sensory Motor Integrated Learning Experience (SMILE) therapy in Calgary is a cutting-edge program that could help Wells achieve his best outcomes, but the cost of the travel and therapy is steep.
“They have to do intensive therapy programs that cost about $2,000 each, which is out of pocket,” Birkenshaw said. “They have to do three to four a year to really get the benefits of it. Then, any specialized equipment is out of pocket, as well.”
Wells also has a higher risk for certain kinds of cancers. After his parents discovered a Seattle Children’s Hospital study revealing potential tumour sites, Chaydin and Lane were referred for a kidney ultrasound that revealed a mass on Wells’ right adrenal gland.
Further investigation showed the mass is a stage one neuroblastoma. The cancer requires frequent travel to Jim Pattison Children’s Hospital in Saskatoon for monitoring.
The family and organizers of the fundraiser hope that their efforts will raise awareness of MPPH and the challenges faced by families affected by the condition.
“We’re just trying to do what we can to support them financially,” Birkenshaw added. “That’s what they really need, is financial support.”
Everyone is welcome at the fundraiser and the family and organizers hope to continue to see the community rally to help baby Wells.
