We've been on a journey for a diagnosis that has finally arrived. Unfortunately, following a series of severe migraines, Jenn lost complete sight in her left eye prior to the diagnosis. She's been hospitalized since December 3, 2021, and is facing a long road to recovery, further treatment, and recalibrating her life. Jenn's the mother of two amazing autistic children who she tirelessly nurtures. She's self-employed due to having two autoimmune disorders prior to the most recent diagnosis of Neuromyelitis Optica (NMO), a central nervous system disorder that primarily affects the eye nerves (optic neuritis), spinal cord (myelitis), and brain.
Being self-employed, the income she contributes to her household declined rapidly as the illness progressed and is now at a full stop. She gradually curtailed the complexity of products in her shop due to the eye strain and pain. Even after going blind in her left eye which started to cause other types of headaches and fatigue in her right eye, she continued to work. It wasn't until she was hospitalized and incapacitated due to the testing and ongoing treatment that she eventually had to close Sweet Events By Jenn for the time being.
The Road to Here
I'm Lauri, Jenn's mom, and even after 33 years, I still remember every detail of the day she was born. Holding her in my arms for the first time and looking into her eyes with wonder, I could see her bright and shiny future before me. It seems all parents have wonderous hopes for their children’s futures. We do our best to ensure they have all the tools needed to be happy and successful while helping to guide them on their journey of chasing their dreams. However, one thing we never expect to plan for is to watch our children suffer from illness year after year.
My daughter Jenn was diagnosed with Dermatomyositis, an autoimmune condition that causes skin changes and muscle weakness when she was only 29 years old. A condition normally found in people much older, Jenn experienced her youthful body seemingly aging overnight.
Before the diagnosis, Jenn was living the dream. She was enrolled in culinary school while raising an amazing little boy and proudly chasing her dream of following her father’s footsteps into the culinary world. I could not have been prouder of my little girl and to see her so excited to finally have the opportunity to finish school and begin her career, was all a mother could ask for.
Unfortunately, her muscle weakness leaves her with rigid joints, pain, and muscle wasting forcing her to give up her culinary dreams…but she's is not one to sit back and moan and complain. Instead, she picked herself up from defeat and pursued a new path in life knowing that it was up to her to support her son despite illness and pain. So, she began a new job working from home as she was denied disability and had to find a way to make it on her own.
I can’t even imagine how difficult it must be for her to fight through the pain every single day and it breaks my heart to watch her suffer. But out of necessity, she began to thrive in her new reality, fighting through the constant pain and the continuous battles with her insurance company denying medication coverage or treatment options. However, despite the struggle, there were also blessings.
Working from home allowed Jenn to be available for various early intervention therapies for her son's autism which requires a lot of special care, and it allowed her to bring another beautiful bouncy baby into the world who, unfortunately, is also autistic but they are Jenn’s entire world. It is amazing watching her with her children and they inspired her to start her own online party favor shop called Sweet Events by Jenn which she is extremely proud of.
I invite you to visit her shop to see all the love and hard work Jenn has poured into it and to read the wonderful reviews left by people who know that Jenn always puts 100% into her work despite the pain and anxiety she is experiencing. Jenn’s online shop was doing very well and allowing her to support her growing family until she suddenly started feeling heaviness in her chest.
After multiple doctor visits and Jenn fighting for someone to listen to the seriousness of her condition, it was discovered that she had a blood clot in the right lung and another smaller blood clot pressing against her heart. The results of the CT-Scan made it clear that the blood clot had been there for a while as the lower third of her right lung tissue was dead.
It is common for people with Dermatomyositis to develop lung disease but after a week in the hospital to get her numbers adequate for a safe discharge, Jenn was further diagnosed with Antiphospholipid Syndrome. A disorder of the immune system that causes an increased risk of blood clots but once again, Jenn did not allow this new diagnosis to hold her back.
She continued to home school her amazing kids due to both COVID and their special needs and she grew her online business to a very successful endeavor. Nothing seemed to knock her down as she always pushed through even though I know she is in constant pain and full of fear.
The fear she will not get to see her children grow. The fear she will lose her battle against the multiplying autoimmune conditions. And fear she will not be able to continue to support her family as her health deteriorates which leads us to why I am here to seek your support today.
Jenn has now lost all sight in her left eye after months of severe migraines due to now being diagnosed with Neuromyelitis Optica (NMO) is a central nervous system disorder that primarily affects the eye nerves (optic neuritis), spinal cord (myelitis), and brain. Her world is slowly going dark which when added to the increasing pain, muscle weakness, and joint pain… Jenn is terrified that she is going to lose her battle.
She was forced to stop all orders on her site and even had to cancel some existing orders as she can no longer keep up with demand due to the severity of the symptoms she is experiencing. Jenn is now in the hospital with no known date for release at this time making it impossible for her to support her family and continue to cover all health care expenses without some aid. So, today I am here to humbly ask for your support in helping my daughter fight for her health, her family, and home.
I have been helping with expenses, but I can't replace 100% of her income. Your generous donations will go directly towards Jenn’s medical and living expenses allowing her to focus on treatments and her family during this very difficult time.
Jenn is and always will be my little girl. I wish I could take away her pain and her fear. I wish I could make it all better. If this campaign can help remove even one worry off of her mind, I would be forever grateful as she deserves some peace.
I cannot thank you enough for your support and ask that you please share this campaign with your loved ones in the hopes that Jenn can finally find time to heal and move forward.
Thank you all!