My name is Crystal, and I'm reaching out to our community to support the wonderful Hill family of Dryden as they navigate an incredibly difficult medical journey with their youngest daughter, Oakley.

Many of you know Katie as a passionate local Doula and Chris as a dedicated tradesman. For years, they've been the first to offer help, support, and care to everyone in their circle. Now, it's our turn to show up for them.

The funds raised will help the Hills cover urgent medical, travel, and accommodation costs so they can focus entirely on Oakley's care. Below, Katie shares the details of their current situation:

Navigating the world of unexpected medical happenings feels never ending for us.

As most people know, our family carries Chronic Granulomatous Disease. CGD is a genetic disorder where the immune system’s white blood cells cannot properly kill bacteria and fungi.

Tucker, our youngest, had undergone a bone marrow transplant to cure him of his CGD back in 2022 with his older brother, Eli as his donor. Tucker’s BMT was a success and he has been living life as a normal kid ever since.

Oakley, our oldest, is a carrier for CGD which typically means her immune function is somewhat suppressed when compared with a normal, unaffected person. As a carrier, the CGD continues to pass through generations of reproduction. Typically the amount of immune suppression isn’t enough to be too troublesome with infection fighting.

Following along with an immunologist has come to show us her immune function had been about 25% for the last couple of years.

Since September 10th, Oakley has been fighting an infection. This started with enlarged and painful lymph nodes in her neck (5 total nodes) and was accompanied by fever, fatigue, suppressed appetite and limited jaw movement.

Initially hoping her immune system would still be able to fight the bacteria well enough, we continued to be treated at home in Dryden with various oral and IV medications.

Progressively worsening and no major healing in sight, we headed to the Winnipeg Children’s Hospital, where her immunologist is located - and also, where Tucker had his BMT. This is a space we knew we would be able to find answers, direction and a plan of action - with a team who understands the complex layers of CGD.

Her first admission came with various scans, drainage and biopsy of her infected lymph nodes.

The biopsy revealed a bacteria called Burkholderia Cepacia. This is a very rare bug and also very resistant to antibiotics. Oakley was given a few days of Meropenem (big beast antibiotics) in her IV and sent home with oral antibiotics to continue treatment at home.

While at home, we noticed the neck lymph nodes continue to grow and multiply to lymph nodes in her groin which made it very painful to walk.

Back to the Winnipeg HSC we went!

This time we are on a course of IV Meropenem for a minimum of 2 weeks before reassessing for improvement.

On the CGD front, we are going to be re-testing her immune function. Assuming it has dropped below 25%, given her body’s reaction to this bacteria. It seems as though her inability to fight this infection is more like a full CGD patient rather than a mere carrier.

Retesting her immune function has to wait until after her infection has passed for an accurate snapshot. It’s possible that we may also investigate finding an HLA match in case bone marrow transplant becomes a suggested option of Oakley in the long run.

For the time being, we have one parent in the hospital with Oakley full time and one parent at home with the boys.

Oakley has an overall good outlook of what is happening with her situation, but this is not the scenario any parent wants for their 9 year old.