Help Marissa & Mahrynn fight HBSL
Donation protected
Marissa & Mahrynn are two young sisters living in Southern California. Together, with their other two sisters, they enjoy movie nights in footie pajamas, sunny days at Disneyland, dressing their cat and dog in dresses, and excelling in their school work (no, really! They enjoy their assignments and are even learning French and Spanish!). Without a doubt, Mahrynn will be the next ukelele extraordinaire with Marissa by her side as the next great bass player. With their guitar-playing sister Mallory, they'll cover Beatles songs and sing some of their originals, where the content includes stories of young love, world poverty, and unicorns.
You would think their archery would be hampered by the bow and arrows clashing into their blue and purple wheelchairs, but these girls are professionals. They don't let their wheels get in the way of shooting the bullseye, and they definitely don't let their forearm crutches interfere with their love of dancing and basketball.
On the kitchen floor of Janice and Gary McLaughlin's Louisiana home, nine month old Marissa took her first steps. Three days later, she had routine vaccinations at the doctor's office. Two hours later, she completely regressed and could no longer hold her head up, let alone toddle around the kitchen. It was thought to be a reaction to the shot, then Vanishing White Matter, then ADEM. After extensive testing, Marissa always tested negative for genetic disorders and hundreds of other diagnosis'. And so, doctors settled for calling it an Undiagnosed Leukodystrophy. Clearly exhausting all of the resources in Louisiana (and Austin, and Dallas, and New York), the family packed up and moved to Southern California in January of 2007, where they started working with the doctors at the Children's Hospital of Los Angeles. After a few months of settling in with Marissa and her older sister Madison (totally healthy), and her two younger sisters Mallory and Mahrynn (also totally healthy), the family was starting to fall into a normal routine of their lives in their new home.
That is, until young Mahrynn celebrated her first birthday that summer. From August until December, it became clear that Mahrynn had began regressing. While she never took steps like Marissa, she ceased crawling and cruising around furniture. The week after Christmas, she had her first MRI. It came back nearly identical to Marissa's.
That's when it was realized that Marissa was not sick because of her nine-month-old immunizations. The vaccination did not MAKE her sick, it just speeded up the inevitable. Mahrynn never had her vaccinations, therefore, she never had anything to "speed up" the regression, it just happened gradually. This clearly WAS indeed a genetic disorder, even though it wasn't a "match" for any of the diseases in the system.
So, now what?
There were no real answers. Lots of tests and procedures and surgeries and biopsies, but no answers. Over the next six years, both Marissa and Mahrynn worked their little butts off in their physical therapy, horseback riding therapy, swimming therapy, and always did what the doctors told them to (even though those exercises are definitely NOT fun).
In 2013, Marissa, Mahrynn and their parents participated in a study that would go on to validate and name their disease. In late 2013, HBSL was announced to the world, and after twelve years, the McLaughlin family finally had their REAL diagnosis.
SO, where does that leave us now? What can YOU do to help?
Since the diagnosis, doctors all over the world are at work to finding a treatment and a CURE for HBSL and it's "sister disease" LBSL, another disease that is caused by mutations in the DARS and DARS2 genes.
The money you donate to this campaign will go towards covering the family's medical expenses, as well as to research to find a cure for Marissa, Mahrynn and other people like them that fight the fight against DARS mutations.
Every donation of $100 or more will enter a drawing to win three (3) tickets to the SOLD OUT Taylor Swift concert in Los Angeles, California on Wednesday, August 26, 2015. To be entered to win the tickets, you must donate $100 or more by August 20, 2015 at 11:59pm PST and include your name and the email/phone number you may be reached. The drawing will be held at midnight and you will be contacted immediately.
Thank you for visiting our page and supporting our cause. God bless you all!
You would think their archery would be hampered by the bow and arrows clashing into their blue and purple wheelchairs, but these girls are professionals. They don't let their wheels get in the way of shooting the bullseye, and they definitely don't let their forearm crutches interfere with their love of dancing and basketball.
On the kitchen floor of Janice and Gary McLaughlin's Louisiana home, nine month old Marissa took her first steps. Three days later, she had routine vaccinations at the doctor's office. Two hours later, she completely regressed and could no longer hold her head up, let alone toddle around the kitchen. It was thought to be a reaction to the shot, then Vanishing White Matter, then ADEM. After extensive testing, Marissa always tested negative for genetic disorders and hundreds of other diagnosis'. And so, doctors settled for calling it an Undiagnosed Leukodystrophy. Clearly exhausting all of the resources in Louisiana (and Austin, and Dallas, and New York), the family packed up and moved to Southern California in January of 2007, where they started working with the doctors at the Children's Hospital of Los Angeles. After a few months of settling in with Marissa and her older sister Madison (totally healthy), and her two younger sisters Mallory and Mahrynn (also totally healthy), the family was starting to fall into a normal routine of their lives in their new home.
That is, until young Mahrynn celebrated her first birthday that summer. From August until December, it became clear that Mahrynn had began regressing. While she never took steps like Marissa, she ceased crawling and cruising around furniture. The week after Christmas, she had her first MRI. It came back nearly identical to Marissa's.
That's when it was realized that Marissa was not sick because of her nine-month-old immunizations. The vaccination did not MAKE her sick, it just speeded up the inevitable. Mahrynn never had her vaccinations, therefore, she never had anything to "speed up" the regression, it just happened gradually. This clearly WAS indeed a genetic disorder, even though it wasn't a "match" for any of the diseases in the system.
So, now what?
There were no real answers. Lots of tests and procedures and surgeries and biopsies, but no answers. Over the next six years, both Marissa and Mahrynn worked their little butts off in their physical therapy, horseback riding therapy, swimming therapy, and always did what the doctors told them to (even though those exercises are definitely NOT fun).
In 2013, Marissa, Mahrynn and their parents participated in a study that would go on to validate and name their disease. In late 2013, HBSL was announced to the world, and after twelve years, the McLaughlin family finally had their REAL diagnosis.
SO, where does that leave us now? What can YOU do to help?
Since the diagnosis, doctors all over the world are at work to finding a treatment and a CURE for HBSL and it's "sister disease" LBSL, another disease that is caused by mutations in the DARS and DARS2 genes.
The money you donate to this campaign will go towards covering the family's medical expenses, as well as to research to find a cure for Marissa, Mahrynn and other people like them that fight the fight against DARS mutations.
Every donation of $100 or more will enter a drawing to win three (3) tickets to the SOLD OUT Taylor Swift concert in Los Angeles, California on Wednesday, August 26, 2015. To be entered to win the tickets, you must donate $100 or more by August 20, 2015 at 11:59pm PST and include your name and the email/phone number you may be reached. The drawing will be held at midnight and you will be contacted immediately.
Thank you for visiting our page and supporting our cause. God bless you all!
Organizer
Madison McLaughlin
Organizer
Los Angeles, CA