Help Aria battle MLD and Brie fight cancer!
Beschermde donatie
With the tremendous outpour from family, friends and colleagues reaching out and asking how they can support this loving family from Brandon, MB, we have set up a Go Fund Me for Aria and Brie Hall. The family has been dealing with not one, but two sick kids both having rare diseases. Aria (not quite 2 years old) has a debilitating neurological disorder and Brie (4 years old) has Cancer (Ewing Sarcoma). Along with all that has been happening Shaleena and Garrett also welcomed a new baby boy, Cole on January 7th to their busy family.
This is Aria’s journey:
At 18 months old Aria’s left eye kept going inwards, then slowly everything just kept getting worse, her right eye started going inwards sometimes too. Aria used to stand, use her walking toy, go around furniture and could sit up perfectly, now she does not even try to walk, has no balance, can’t sit up properly, and will cry out if you try to stand her up or she will just fall backwards, her crawling turned into her just dragging her legs behind her and finally to not being able to move. Initial visit with Brandon pediatrician yielded no answers, resulted in an emergent referral on November 24th to the Children’s Hospital at Health Sciences Centre in Winnipeg. Since then, Aria has met with several specialists, had bloodwork, genetic testing, MRI, spinal taps, ultrasound, Occupational Health assessments and numerous other diagnostic tests which unfortunately still hasn’t led to a clear diagnosis. The treatment so far has been thickening all her fluids to honey thick so that she doesn’t aspirate and trialing Carbidopa-Levodopa to see if it helps her muscle tone. They have had to purchase a special car seat, bath seat, sitting chair and highchair to help with her weak core strength and stiff leg muscles.
At a meeting with all four of her specialists on Feb 10th they advised that all of her tests have been coming back normal which means there is still no diagnosis. They are doing one of their last tests available (Exome Trio test) of Garrett, Shaleena and Aria to see if they are carriers of an abnormal gene. There is only 25% chance of finding a diagnosis through this test, if this comes back negative there is only one other test left available for genetics to do and that’s all they can do in Winnipeg.
This is Brie’s story:
Starting a little before Christmas Brie developed a lump on her left cheek just below her ear. On December 28 she went for an ultrasound in Neepawa which resulted in an emergent referral to a pediatric oncologist at the Children’s hospital in Winnipeg. By Dec 31, she was going for a CT scan with a biopsy scheduled for January 5th followed by a PET scan. She was diagnosed with Ewing Sarcoma (a rare cancer affecting only approximately 3 children in a million) that will need ongoing treatments every two weeks (chemotherapy, and possibly surgery and radiation) in Winnipeg for the next foreseeable future. On January 19 a port was surgically implanted to facilitate the treatments which began on January 20th. The Chemotherapy schedule so far has involved multiple days of treatment at Children’s hospital in Winnipeg, followed by daily injections and medications at home.
So this is where we need your help! The goal is to raise funds for everything that they are going to need help with during these trying times. The family would like to help Aria get a diagnosis which may involve a trip to Toronto Sick Kid’s or the Mayo Clinic team in the USA for assessment. In the meantime, Aria will continue to need to travel to Winnipeg for assessments, ongoing physiotherapy and occupational therapy. They will have to purchase ability devices such as special strollers, walking devices and sitting apparatus to help with her mobility issues. Brie will have multiple trips to Winnipeg for treatments throughout the upcoming year or longer with long hospital stays. Let’s help them cover the cost of gas, hotels, meals, lost wages and other expenses.
The family couldn’t be more thankful for the wonderful care the kids have received at The Children’s Hospital of Winnipeg, the accommodations at The Ronald McDonald House Charities, Westman Dream for Kids and the numerous messages of thoughts and prayers expressed to them.
If you choose offline donations they can be mailed to:
Shaleena & Garrett Hall
c/o Martin Hales
PO Box 1763
Neepawa, MB
R0J1H0
This is Aria’s journey: At 18 months old Aria’s left eye kept going inwards, then slowly everything just kept getting worse, her right eye started going inwards sometimes too. Aria used to stand, use her walking toy, go around furniture and could sit up perfectly, now she does not even try to walk, has no balance, can’t sit up properly, and will cry out if you try to stand her up or she will just fall backwards, her crawling turned into her just dragging her legs behind her and finally to not being able to move. Initial visit with Brandon pediatrician yielded no answers, resulted in an emergent referral on November 24th to the Children’s Hospital at Health Sciences Centre in Winnipeg. Since then, Aria has met with several specialists, had bloodwork, genetic testing, MRI, spinal taps, ultrasound, Occupational Health assessments and numerous other diagnostic tests which unfortunately still hasn’t led to a clear diagnosis. The treatment so far has been thickening all her fluids to honey thick so that she doesn’t aspirate and trialing Carbidopa-Levodopa to see if it helps her muscle tone. They have had to purchase a special car seat, bath seat, sitting chair and highchair to help with her weak core strength and stiff leg muscles.At a meeting with all four of her specialists on Feb 10th they advised that all of her tests have been coming back normal which means there is still no diagnosis. They are doing one of their last tests available (Exome Trio test) of Garrett, Shaleena and Aria to see if they are carriers of an abnormal gene. There is only 25% chance of finding a diagnosis through this test, if this comes back negative there is only one other test left available for genetics to do and that’s all they can do in Winnipeg.
This is Brie’s story:
Starting a little before Christmas Brie developed a lump on her left cheek just below her ear. On December 28 she went for an ultrasound in Neepawa which resulted in an emergent referral to a pediatric oncologist at the Children’s hospital in Winnipeg. By Dec 31, she was going for a CT scan with a biopsy scheduled for January 5th followed by a PET scan. She was diagnosed with Ewing Sarcoma (a rare cancer affecting only approximately 3 children in a million) that will need ongoing treatments every two weeks (chemotherapy, and possibly surgery and radiation) in Winnipeg for the next foreseeable future. On January 19 a port was surgically implanted to facilitate the treatments which began on January 20th. The Chemotherapy schedule so far has involved multiple days of treatment at Children’s hospital in Winnipeg, followed by daily injections and medications at home. So this is where we need your help! The goal is to raise funds for everything that they are going to need help with during these trying times. The family would like to help Aria get a diagnosis which may involve a trip to Toronto Sick Kid’s or the Mayo Clinic team in the USA for assessment. In the meantime, Aria will continue to need to travel to Winnipeg for assessments, ongoing physiotherapy and occupational therapy. They will have to purchase ability devices such as special strollers, walking devices and sitting apparatus to help with her mobility issues. Brie will have multiple trips to Winnipeg for treatments throughout the upcoming year or longer with long hospital stays. Let’s help them cover the cost of gas, hotels, meals, lost wages and other expenses.
The family couldn’t be more thankful for the wonderful care the kids have received at The Children’s Hospital of Winnipeg, the accommodations at The Ronald McDonald House Charities, Westman Dream for Kids and the numerous messages of thoughts and prayers expressed to them. If you choose offline donations they can be mailed to:
Shaleena & Garrett Hall
c/o Martin Hales
PO Box 1763
Neepawa, MB
R0J1H0
Organisator en begunstigde
Martin Hales
Organisator
Neepawa, MB
Shaleena Marie Hales
Begunstigde