As many already know, the last 9 months have been a constant medical battle for my best friend, since childhood, Susan Kravitz Hopper’s granddaughter, Tenley. Tenley has been diagnosed with a very rare condition called CRMO- Chronic Recurrent Multifocal Osteomyelitis. CRMO is a very rare 1 in 1 million diagnosis. It is a genetic auto-inflammatory disease with no cure or standard treatment. Each case is individual, and each person is different. Lesions form in the bones and through the marrow. She has had numerous MRI’s and different medications. Unfortunately, this disease has had very little research done because of its rarity. The duration and treatment of this disease is unknown. It could take several years but we pray that Tenley will go into remission. Inside, her little body is fighting an incredible battle. Her inflammation levels can sky rocket at any time. With that comes excruciating pain that most adults would find intolerable.
While on the outside Tenley seems like a healthy child, she is not. She tries to stay positive and do the things that she always did in between her bouts of pain, but her energy level is not what is was.
The funds raised from this campaign will be used to offset some of the continued medical expenses for Tenley’s medical care and will also be used toward her travel expenses to the University of Iowa Children’s Hospital to be seen by a CRMO specialist twice a year.
This last year has brought this diagnosis to their world that no one could ever imagine. While her mother, who is a single mom of 2 has a good job and insurance, that has provided her basic needs for her family, it has caused a large financial burden. Large co-pays, lost time of work for doctor’s appointments, providing things like a wheelchair, installing bathroom apparatus to make it easier for Tenley to maneuver around, and travel expenses to her rheumatologist in Gainesville, Florida and Iowa City, Iowa. Right now, Tenley can only walk with crutches so she primarily gets around in her wheelchair. The family does not know all to expect, however they know there will be a life time of expenses, more pain, spreading of the disease and she will become totally crippled without ongoing treatment. Her family has helped her as much as they can, but cannot afford the ongoing treatment.
In 3 weeks she will be begin infusion. This consists of three consecutive days of treatment, each infusion lasting four hours. Tenley is to have this done every 3 months for the next year. Because the hospital is not close to home, this will require lodging for the days that Tenley needs to be there.
Any donations will be greatly appreciated. Kirsten (Tenley’s and Piper's Mom) has always been the first one to come to someone’s aid when needed. She never asks anyone for help. I am asking for her. If you cannot give please pray for her and share this on your page.
- Dianne Peterson Silver
- Anne Gripshover
- Thomas Bliss
- Mary Aquila
- Michael Lacey
Organizer and beneficiary
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