Support baby Ezra who has a severe life-limiting condition

September 19, 2024 brought a wonderful blessing into the lives of James and Shayla - Baby Ezra . For months they weren’t sure they would get the opportunity to meet their baby boy face to face. Through many appointments with specialists and bi-weekly ultrasounds, it was clear Ezra had a huge battle before him. Although it was impossible to diagnose his condition while he was still in the womb, he clearly had a rare condition that would make his survival very difficult.

Right after birth Ezra was whisked immediately into NICU and placed in an incubator, a feeding tube was threaded through his nostril down into his tiny stomach, and his mom and dad, grandmas and grandpas, and his many aunts and uncles all held their breath to see how he would do outside his mom’s womb. They rejoiced greatly at his birth while at the same time battled against this test of their faith in God’s goodness and the worry and anxiety that continually sought to overwhelm them. Ezra was soon diagnosed with a very rare genetic birth defect called Smith-Lemli-Opitz Syndrome, or SLOS for short. While some cases can be quite mild, it was clear Ezra’s condition is severe.

While initially Ezra seemed to do quite well he started losing weight after his birth, a trend that continued for over two weeks following his birth. As the weeks progressed he began to experience drops in his oxygen levels, and soon was receiving oxygen treatment. He remained in NICU, with his mom Shayla at his side every day - often for much more than 12 hours each day, as she devoted herself to learning about their son’s condition and how to nurture and care for him. His dad James continued his full-time university studies and his part-time job and often sat with his wife and son during the evenings and days off. Shayla and James’ loving family living in nearby communities would come to visit often to help with housekeeping, prepare meals, encourage them and pray with them; family further away and their church family joined them in prayer, all asking for God’s grace to supply comfort and courage to them and for Ezra to gain weight, strength and for healing.

By the end of October, Ezra struggled more to maintain his oxygen levels. Scans revealed his heart was struggling and seemed to be deteriorating. The young Hodson family was referred to Canuck Place in Vancouver, a palliative care facility for children with life-limiting diseases and their families. While the family continued to pray for Ezra to be healed, they wrestled with the possibility that Ezra may soon be called up from us to heaven.

In early November, James and Shayla were told that Ezra might have just days left. The NICU ward and Canuck Place worked as quickly as possible so that Ezra could be discharged so that James and Shayla could have time with their son together in their home as a family. On the afternoon of November 8, 2024, Ezra was loaded into the car and his loving parents drove him home.

Ezra depends on an oxygen machine because his heart is still struggling to pump oxygenated blood through his body. It is about the size of a portable air conditioner and just as heavy. He is also connected to a monitor that constantly measures his respiratory rate, heart rate and oxygen levels. This equipment has been loaned to them by the hospital.

Our goal is to raise funds so that James and Shayla won't have to worry about how they'll afford equipment or specialized treatment that may not be covered by medical plans. How long Ezra has to live is still very unclear and depends on very critical ongoing treatment. Among other equipment, they hope to purchase a battery-powered portable oxygen machine, a device that costs thousands of dollars.

At the core of all of this is James and Shayla’s unwavering conviction that God created Ezra, so he has the right to be given every chance to survive and live as joyful and healthy a life as is medically possible. Their trust is in God that as they seek the treatment Ezra needs, God will supply for their needs and continue to give them strength and courage. James and Shayla will use all funds raised at their discretion with this conviction to do all they can for their baby boy. Should God take Ezra home to heaven, these funds will help them with funeral costs and to allow them time to grieve without Shayla having to return to work immediately.

Would you consider being a part of that answer to the prayers of his parents, grandparents, aunties, uncles and many others? Any amount will forever be deeply appreciated and will directly support this beautiful young family and give Ezra the best chances of having the healthiest, most joyful life possible. Thank you!