Meet William Chaulk and his family of Deer Lake, NL
Meet William Chaulk of Deer Lake
It is hard to put into words how a parent feels when their child has been diagnosed with a serious illness. It has to be one of the most difficult experiences for a family. And for families who don’t live close to the care and resources they need, there is an added stress, distance. RMHC gives families with a sick child what they need most – each other.
On December 18th 2020, Kaley Chaulk noticed her 10-month-old son William wasn’t well. Holding him near lifeless in her arms, Kaley rushed William to the Western Regional Hospital in Corner Brook with the support of her parents Jo-Ellen and Ryan, and her grandparents. William spent the night in Intensive Care Unit to stabilize him before being airlifted to St. John’s more than 600km away. Overnight William’s condition did not improve, so the treating physician insisted he still needed be transferred to St. John’s.
Within a few days it was determined that William had Fanconi Syndrome, which is a rare disorder of kidney tubule function. A later diagnosis of Cystinosis was discovered to have caused the initial damage to his kidneys. This is a rare disease that affects only 2000 people in the world. The disease causes a build up of cysteine in cells that can cause damage to many organs and tissues of the body, if left untreated. While there is no cure, there is treatment to slow down this disease and the need for a future kidney transplant.
For the Chaulk Family, this was going to be a challenging road ahead in another city far from home. This is something no family could prepare for. They worried about numerous things, even the simple things, like where they would stay. Shortly after William was admitted to the children’s hospital, the family was introduced to the programs and services of Ronald McDonald House.
”Ronald McDonald House has provided a place that our family can be together during this difficult time. It has made a difference for all of us and especially for our daughters, Kaley, Williams’s mom and our youngest daughter Kate who is 9 years old. Ronald McDonald House is a place that we can all play with William a few hours a day outside of the hospital setting and feel at home. We are all together and that’s what matters the most. So far, we have been able to have quality family time together during holidays, Kaley’s birthday & Valentine’s Day.“ said Jo-Ellen, William’s grandmother.
William recently had surgery for a g-tube insertion so he can take high doses of medication that he will need for his lifetime. He continues to get frequent blood work to monitor his kidney function levels. Even though William has been hospitalized since December 2020, he continues to be surrounded by his family. William continues to smile, laugh and play and is a true warrior while dealing with this invisible illness.
Jo-Ellen added, “Ronald McDonald House is helping us get through these trying times. The home cooked meals and baked goods have been so appreciated. The weekly McDonald’s delivery gives us a special treat to look forward to. Having laundry facilities close by has been a lifesaver. It’s the small things that matter the most during difficult times and Ronald McDonald House is all about the little things. It is so nice to interact with other families and share stories. They know exactly what we are going through. We can be there for each other and provide support. The volunteers and staff are angels on earth. They interact with all families and provide a sense of home and comfort. Thank you for everyone that supports Ronald McDonald House.”
While William’s journey is far from over, with treatments expected to continue into his adult life, the Chaulk Family have found strength together at Ronald McDonald House and have come to rely on the vital programs and services.