The Hall family consisting of Heather , Jonathon, Saje, Sawyer and Tristan, had to say goodbye to their beautiful baby boy, Jasper Hall, on Sunday January 14th.
Financially, their entire family needs time to heal, my hope is that we can provide them with a safety blanket to do just that! Jonathon and Heather are the most caring, heartfelt people that I know. They are constantly going out of their way to support those around them, now it’s our turn to show love and gratitude back.
Jasper was born healthy and thriving on June 18th, 2017. Heather and Jonathan we’re so thrilled as he was the final piece to their family being complete. Near the end of 2 months, his weight started to plummet and he started to miss big developmental milestones. After many visits to the Alberta Children’s Hospital, every test imaginable to find a diagnosis, and many battles along the road: his team of physicians suspected a rare form of Riboflavin Deficiency. Jasper began treatment where he was supplemented with Riboflavin, he needed an Ng tube for feeds, and we started to see progress. Our hopes were restored. Our little man finally started to put on some weight, his muscle tone was improving, however he was never able to lift his head or crawl. He began to smile, see and hear the world around him more clearly & he found his laugh ( which was incredibly contagious!). We thought we had found a cure as his health was trending upwards in a matter of weeks. Just as quickly, we found out that a Riboflavin Deficiency was not the diagnosis. Back to square one.
Christmas Eve, the family was rushed into the PICU as he started to experience seizures. Our little trooper was put on life support, taken off, transitioned to a regular unit, and returned right back again to PICU. To say that it was a roller coaster ride for his life is an understatement. Every day we were fearful that it may be his last, yet still hoped and planned for a future.
After more symptoms presented themselves, another rare condition called Mitochondrial Disease appeared to be the most fitting diagnosis. Although a bit of an answer, this form of disease is not fully understood and medical care is established through trial and error knowing that the first 2 years of his life would be incredibly challenging.
During the final week of his life, a blood clot was discovered blocking his entire hepatic vein preventing his liver from functioning. Surgical procedures were not an option, giving Jasper only a few days left to show his family love.
Jasper was moved to hospice care at the Calgary Rotary Flames house. Jasper decided that it was time to no longer fight his battle and he passed away shortly before his 7 month birthday on Sunday, January 14th. He was surrounded by love, snuggled up with his parents in bed, with friends and family close by. Of all days, he chose to say goodbye on his Mother’s birthday. Talk about a greater purpose in life. It was the most beautiful, heart aching, peaceful experience to be a part of.
Heather and Jonathon have consented Jasper’s team of specialist’s to continue using his specimens for further research. He was a mystery boy with many conflicting symptoms and test results. Mitochondrial Disease was never a definitive diagnosis. If it did happen to be a different strain of such disease, his medical case and their continued research will be helping future children with the same battle. This is truly amazing and courageous of the family to think of others during this time. That just goes to show you who they truly are.
Jaspers parents are in a position now that no parent should have to experience. Funeral costs are expensive, adjusting to a single income is going to be a challenge as Heather closed down her dayhome to provide full time care for Jasper. They are a low-income family to begin with raising 3 children now. Overall they need every bit of support that they can get! Apart from funeral expenses, funding will go towards: living costs related to keeping their home, groceries, bills, activities for the kids, daily care supplies, etc.
If you’d like to support the family in any other way, please feel free to reach out to me personally. I’m more than willing to organize / manage this for the family. My cell number is [phone redacted].
From the bottom of my heart. Thank you, thank you, thank you ❤️ every little bit of support is going to mean the world to them.
( close family friend of the Hall’s)