Halla and Ayva’s Journey with Labrune Syndrome
Donation protected
I’ve created this Gofundme with the hope of helping out my best friend and her daughters. My best friend Lindsey has two beautiful girls who happen to have a very challenging and terminal disease - Labrune Syndrome. Despite the adversity they’ve faced they remain full of life. They’re funny, clever, and when they love you it’s felt in a way that makes you feel like you’re the luckiest person alive. They’re incredible souls and the hand they’ve been dealt is completely unfair.
You may have seen a previous fundraiser on Gofundme involving this family - that fundraiser pulled together over $20,000 to assist with research into the rare disease. They didn’t personally benefit from it other than the pride that came from raising so much money with the hope of supporting research and a possible treatment. Now…sadly, the family has been personally hit with challenges that come with the disease. Both girls have had brain surgery in the last year. Halla has had 4 brain surgeries and the recoveries have been really difficult. It seems that a little bit of Halla goes with every surgery, which is heartbreaking for everyone who loves her.
More recently, despite all efforts to try and avoid it, Lindsey and her girls caught COVID. This resulted in Halla having long, scary seizures that were very hard to manage. She ended up needing to be urgently intubated and was on life support for over a week. She was in a coma for 8 days…but she miraculously woke up! It was a surprise to everyone as it wasn’t thought that she would pull through. Halla is slowly recovering at home and requires a higher level of care than she ever has. She is unable to feed herself, use the washroom, walk, hold a glass, roll over in bed, stay up for long periods of time…the list goes on. She is in need of equipment in the house to help her feel safe and comfortable at home. At this time, Lindsey has to carry her around the house (Halla is 130lbs) and is caring for her on her own while also parenting Ayva who too, needs support. Unfortunately, Ayva will also need the same equipment at some point in her life. Labrune syndrome is unpredictable and there is no way of knowing when she will be in need of additional support. It could be a week from now, or it could be years down the road. Lindsey is already faced with being unable to take Halla out of the house without someone helping carry her to their vehicle. Her home/vehicle are not currently set-up for Halla so thoughts of Ayva having the same needs is very heavy, overwhelming, and anxiety-inducing.
I know personally that Lindsey would do absolutely anything for her girls and the fact that she is unable to fix any of this is killing her. She’s had to take quite a bit of time off of work to care for her girls over the last year and now has to figure out how to get funds for equipment in her home (wheelchair porch lift, new wheelchair with tilt option, personal lift in the house, specialized feeling equipment, hospital bed, briefs, etc). There is a medication that is also being trialled as a way to slow the progression of symptoms associated with Labrune Syndrome. The cost is $15,000 per month and the maximum coverage has been confirmed to be 50% of that amount. You could imagine how difficult it that would be to have a sudden need to buy just one of those pieces of equipment. To also not have access to a medication that could provide a better quality of life for a longer period of time would be extremely difficult for any parent. Lindsey’s income, especially given it’s currently been reduced, will not allow for any of the items to be outright purchased. Used items are being looked for however despite not being new they still cost thousands.
Halla deserves the world and Lindsey deserves to have the opportunity to give her the best possible life. Going to the bathroom with ease, leaving the house without having to be carried out the door, and being able to feed herself are all luxuries Halla no longer has. The small day-to-day tasks most of us take for granted are now things Halla longs to be able to do.
If you can’t donate please share their story - awareness is so important. Below are previous news segments that included interviews with Halla, Ayva, and Lindsey:
https://beta.ctvnews.ca/local/edmonton/2019/3/31/1_4359841.html
https://globalnews.ca/video/6217165/2-edmonton-area-sisters-share-story-of-having-same-rare-disease/amp/
You may have seen a previous fundraiser on Gofundme involving this family - that fundraiser pulled together over $20,000 to assist with research into the rare disease. They didn’t personally benefit from it other than the pride that came from raising so much money with the hope of supporting research and a possible treatment. Now…sadly, the family has been personally hit with challenges that come with the disease. Both girls have had brain surgery in the last year. Halla has had 4 brain surgeries and the recoveries have been really difficult. It seems that a little bit of Halla goes with every surgery, which is heartbreaking for everyone who loves her.
More recently, despite all efforts to try and avoid it, Lindsey and her girls caught COVID. This resulted in Halla having long, scary seizures that were very hard to manage. She ended up needing to be urgently intubated and was on life support for over a week. She was in a coma for 8 days…but she miraculously woke up! It was a surprise to everyone as it wasn’t thought that she would pull through. Halla is slowly recovering at home and requires a higher level of care than she ever has. She is unable to feed herself, use the washroom, walk, hold a glass, roll over in bed, stay up for long periods of time…the list goes on. She is in need of equipment in the house to help her feel safe and comfortable at home. At this time, Lindsey has to carry her around the house (Halla is 130lbs) and is caring for her on her own while also parenting Ayva who too, needs support. Unfortunately, Ayva will also need the same equipment at some point in her life. Labrune syndrome is unpredictable and there is no way of knowing when she will be in need of additional support. It could be a week from now, or it could be years down the road. Lindsey is already faced with being unable to take Halla out of the house without someone helping carry her to their vehicle. Her home/vehicle are not currently set-up for Halla so thoughts of Ayva having the same needs is very heavy, overwhelming, and anxiety-inducing.
I know personally that Lindsey would do absolutely anything for her girls and the fact that she is unable to fix any of this is killing her. She’s had to take quite a bit of time off of work to care for her girls over the last year and now has to figure out how to get funds for equipment in her home (wheelchair porch lift, new wheelchair with tilt option, personal lift in the house, specialized feeling equipment, hospital bed, briefs, etc). There is a medication that is also being trialled as a way to slow the progression of symptoms associated with Labrune Syndrome. The cost is $15,000 per month and the maximum coverage has been confirmed to be 50% of that amount. You could imagine how difficult it that would be to have a sudden need to buy just one of those pieces of equipment. To also not have access to a medication that could provide a better quality of life for a longer period of time would be extremely difficult for any parent. Lindsey’s income, especially given it’s currently been reduced, will not allow for any of the items to be outright purchased. Used items are being looked for however despite not being new they still cost thousands.
Halla deserves the world and Lindsey deserves to have the opportunity to give her the best possible life. Going to the bathroom with ease, leaving the house without having to be carried out the door, and being able to feed herself are all luxuries Halla no longer has. The small day-to-day tasks most of us take for granted are now things Halla longs to be able to do.
If you can’t donate please share their story - awareness is so important. Below are previous news segments that included interviews with Halla, Ayva, and Lindsey:
https://beta.ctvnews.ca/local/edmonton/2019/3/31/1_4359841.html
https://globalnews.ca/video/6217165/2-edmonton-area-sisters-share-story-of-having-same-rare-disease/amp/
Organizer and beneficiary
Sarah Beltran
Organizer
Sherwood Park, AB
Switz Linz
Beneficiary