Wells Journey

Hi our names are Tammy and Paige and we are Wells aunties.

We are raising funds for an amazing little boy. He has suffered so much for someone so young, but he never stops smiling!!

His smile is like a ray of sunshine.

Lane and Chaydin found out that Wells had a rare genetic condition called MPPH (Megalencephaly, Postaxial Polydactly, Polymicrogyria, Hydrocephalus) Syndrome at 39 weeks of pregnancy, only a week before she was set to give birth. MPPH is extremely rare, and they were told Wells would be the 76th case, worldwide.

Wells was born by a traumatic vacuum delivery, and spent 4 days in the NICU getting baseline testing and recovering from the delivery.

Wells condition was new to every doctor who met him. Chaydin and Lane found themselves becoming the experts through reading studies, and meeting other families who had experiences navigating raising a child with medical complexities.

They learned of intensive physical therapy when Wells was 11 months old. They booked him in for his first week long physical therapy intensive, and from there noticed big changes in Wells’ overall awareness, strength, and endurance.

Fast forward to now, the family has been able to do several more intensive therapies ranging in duration from one to two weeks, both in Calgary and Arizona, or even arranging these therapists to travel to Saskatchewan.

Unfortunately, these types of early intervention programs aren’t available in the province of Saskatchewan so families in their situation have to travel.

Wells had a medical setback in October ‘22 when they discovered a mass on his adrenal gland. After many tests and trips to the children’s hospital and Regina General, the final diagnosis of Adrenal Neuroblastoma was made.

This didn’t stop Wells. The family travelled back and fourth to Saskatoon for testing, follow-ups, and monitoring, until this previous September when the tumor was removed. Wells still needs to be monitored, however is cleared to continue in physical therapy!

This week, Chaydin received an email from the NAPA center of Denver, Colorado, USA informing them that Wells had been selected to participate in an intensive in January 2025! The NAPA centre is one of the first establishments that have specialized in intensive therapies and early interventions for kids experiencing disability.

Because of their cutting edge methods and successes, the demand to get in is high, to the point where they introduced a lottery system to get in.

Chaydin placed Wells on the lottery list last year with no success, however this year after waiting to hear, Napa sent Chaydin an email informing her that Wells is able to attend a three week intensive therapy program from January 6-24, 2025.

This is extremely exciting as this will be the first 3 week intensive therapy program that Wells will be able to complete, with state of the art equipment and training from their therapists, this could open up a lot of growth and development for Wells.

Professionals have commented on how far Wells has come with these intensives and have reassured the family that these intensives have immensely helped with his physical development and awareness and likely without these therapies he would not be as far along as he is.

His strength continues to improve with regular physio and the family is so hopeful to make this Napa adventure a reality.

The financial burden of raising a child with complex medical needs is unfathomable. The family has medical benefits, however this only scratches the surface of the costs associated with therapies, some equipment not covered by programs, and additional needs. The family has had fundraising done in the past, helping immensely with physical therapy intensives and equipment up until this point, but this intensive will cost upwards of 160$USD/hour

For 4 hours a day, 5 days a week for three weeks. This does not include travel, accommodations, etc.