Support for Brett and Anna Parker

Just 5 years ago, Anna and Brett were pregnant with their first baby. Sweet Joplin came into the world happy and full of life. There was rarely a time in his first 4 years of life that he wasn't laughing, smiling or moving around.
At 3 months, Anna and Brett realized something was wrong, and although they had concerns, their paediatrician didn't start taking them seriously until 6 months of age. He was displaying signs of obvious global delays and had many medical complexities. By the age of 3, Joplin was diagnosed with HECW2 gene mutation but was given a full life expectancy. He is 1 of 20 children world-wide to have this condition.
It wasn't until last summer that Joplin ended up being hospitalized and was transferred to ICU. Neurology then referred them to Canuck Place for palliative care.
Out of the blue, he started to develop intractable seizures, respiratory depression (and sometimes respiratory failure), brain atrophy, and eventually, he started losing skills that they had worked so hard to teach him. Over time, due to the seizures and progression of his illness, he started having major organ failure.
As it stands now, Joplin is at Canuck place receiving end of life care. The doctors have told Brett and Anna that there is nothing else they can do, aside from provide comfort care with pain management medications and oxygen support. Brett and Anna are in shock that Joplin hit this point in his care so quickly, and their family is devastated. Their family was blindsided with this news right after Christmas and have had no time to prepare for this.