Erin's fight against NF
Donation protected
Dear family and friends,
First off, I want to thank everyone for their support and fundraising efforts for NF over the years. Our family is surprised and grateful every year by the generosity of you all. This year, Team Barin’ 4 Erin raised over $15,000 for the Cupid’s Undie Run!!! What what?!
As many of you have probably noticed, Erin has developed some concerning health issues over the past couple years due to progression of her NF tumors. Without boring you with too much detail, the basic breakdown is that her tumors are growing and they are causing a variety of symptoms. The obvious ones are weight loss, worsening balance and hearing, chronic debilitating neck and back pain, episodes of extreme fatigue that leave her bedridden for days, and hoarseness/swallowing issues due to vocal cord paralysis. Honestly, the list goes on much longer than this and I’ve thought to myself many times, "Is this it? Is this what the rest of her life will be like? ". No one deserves to live like this, especially not our sweet Erin.
Erin and my mom were recently in Baltimore at Johns Hopkins for her annual check up at the NF clinic. After much discussion and the input from Neurologists, Neurosurgeons, Oncologists, ENTs, and plastic surgeons, a comprehensive treatment plan has been recommended. They will be returning to Baltimore early June for a myriad of surgeries to include: 1.) Excision of a spinal tumor in her lower back that’s compressing her spinal cord and adjacent nerves. 2.) Vocal cord augmentation to address her paralyzed vocal cord that’s causing a weak voice and trouble swallowing. 3.) Facial re-animation surgery to help address some of the asymmetric features that she sustained after prior brain surgery caused facial paralysis. They will be in Baltimore for 2.5 weeks and then she’ll be out of work for at least 2 weeks once home. Following surgery, she'll likely begin Avastin in attempts to shrink a cervical spine tumor that is causing many of her symptoms. This will be given IV at Moffitt Cancer Center in Tampa, initially every 2 weeks and then eventually every 3 weeks.
It’s going to be a long road, but the goal is to get Erin healthy again, or at least as healthy as possible. It’s been heart breaking for us all to see Erin lose her smile and I’m making it my mission to get it back!
Here's how you can help. Erin's insurance has a large deductible so we’re trying to accomplish as much as possible in the 2019 calendar year to maximize funds. Also, some of the facial surgery is considered cosmetic and may not be covered by her medical insurance. Your donations will go directly towards Erin’s medical bills, travel costs back and forth to Baltimore, hotel stays, and cost of living while she is out of work.
Thank you for your continued support of Erin. This is HER year!




First off, I want to thank everyone for their support and fundraising efforts for NF over the years. Our family is surprised and grateful every year by the generosity of you all. This year, Team Barin’ 4 Erin raised over $15,000 for the Cupid’s Undie Run!!! What what?!
As many of you have probably noticed, Erin has developed some concerning health issues over the past couple years due to progression of her NF tumors. Without boring you with too much detail, the basic breakdown is that her tumors are growing and they are causing a variety of symptoms. The obvious ones are weight loss, worsening balance and hearing, chronic debilitating neck and back pain, episodes of extreme fatigue that leave her bedridden for days, and hoarseness/swallowing issues due to vocal cord paralysis. Honestly, the list goes on much longer than this and I’ve thought to myself many times, "Is this it? Is this what the rest of her life will be like? ". No one deserves to live like this, especially not our sweet Erin.
Erin and my mom were recently in Baltimore at Johns Hopkins for her annual check up at the NF clinic. After much discussion and the input from Neurologists, Neurosurgeons, Oncologists, ENTs, and plastic surgeons, a comprehensive treatment plan has been recommended. They will be returning to Baltimore early June for a myriad of surgeries to include: 1.) Excision of a spinal tumor in her lower back that’s compressing her spinal cord and adjacent nerves. 2.) Vocal cord augmentation to address her paralyzed vocal cord that’s causing a weak voice and trouble swallowing. 3.) Facial re-animation surgery to help address some of the asymmetric features that she sustained after prior brain surgery caused facial paralysis. They will be in Baltimore for 2.5 weeks and then she’ll be out of work for at least 2 weeks once home. Following surgery, she'll likely begin Avastin in attempts to shrink a cervical spine tumor that is causing many of her symptoms. This will be given IV at Moffitt Cancer Center in Tampa, initially every 2 weeks and then eventually every 3 weeks.
It’s going to be a long road, but the goal is to get Erin healthy again, or at least as healthy as possible. It’s been heart breaking for us all to see Erin lose her smile and I’m making it my mission to get it back!
Here's how you can help. Erin's insurance has a large deductible so we’re trying to accomplish as much as possible in the 2019 calendar year to maximize funds. Also, some of the facial surgery is considered cosmetic and may not be covered by her medical insurance. Your donations will go directly towards Erin’s medical bills, travel costs back and forth to Baltimore, hotel stays, and cost of living while she is out of work.
Thank you for your continued support of Erin. This is HER year!
Organizer and beneficiary
Emily Lenhardt
Organizer
St. Petersburg, FL
Suzanne Earle
Beneficiary