We have launched this campaign to help us support Cameron and her therapeutic/medical needs including physical, occupational and speech therapy and the associated equipement she may need to help her live as independent of a life as possible. We have already learned so much about SMA and other genetic disorders. We wanted to use this opportunity to raise awareness about this condition and the new and improving treatment options that just a couple of years ago were non-existent.
Thank you all for your continued prayers, support and generosity. If you choose to donate, please understand this is a non-tax-deductible gift.
When we received the call that Cameron had tested positive for SMA Type 1, we quickly realized that we did not have much time for action. Cameron’s life expectancy was short, and she was starting to show signs of a rapid decline. We vowed to do whatever we could to ensure she was going to have the best quality of life possible. With that in mind, we hit the phones, the internet, the e-mails and began our search for answers and options.
Two, relatively new, treatment options emerged. The first was an FDA approved drug that would need to be administered via a spinal tap every 4 months for the rest of Cameron's life. The other option, albeit a long shot, was to enroll Cameron in Clinical Trial at Duke Children’s Hospital.
On March 14th, Cameron was admitted to the Duke Pediatric ICU and the next day she received her infusion.
In the days leading up to Cameron's treatment, she was on a downward spiral. Her breathing had become slow and labored, the movement in her arms, legs and mid-section were very limited, and her cries were virtually non-existent. We literally felt like we were losing her.
Since her infusion, Cameron has not only completely stabilized, but we are already starting to see signs of improvement! For one, her crying is back to normal. She is very, very vocal and we welcome every minute of it...even at 5am. Her breathing is great, her appetite is amazing, and her overall strength is improving. She is still very "floppy", but we can see in her eyes a desire to try and push up and roll over. Cameron is like a 1 month old in a 6-month-old body.
Beginning now and over the next several months/years, Cameron will undergo very intense and aggressive physical and occupational therapy virtually every day.
Now that the progression of the disorder has stopped, it's time to train and retrain her body and muscles so that as she gets older she can be somewhat independent.
While there is currently no cure for SMA, the therapies, equipment, and tools that modern medicine has available give Cameron and others dignosed with this disorder, a chance for an improved quality of life.
The donations that we receive for this fund will go directly toward Cameron's therapy and medical needs.
There are really no words to describe the ups and downs we have experienced over the past few weeks. Every day, right in front of us, is a reminder of just how precious life is and how grateful we are for friends, family and the incredible medical community that has helped us along the way.
We are so grateful to be in a position to share Cameron's progress. Again, thank you!
- Mary Schimley
- Alisha Sinitiere (Beach)
- Renee Hewitt
- Frank Engler
- Robert Redfield
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