Casey’s Circle is a nonprofit dedicated to helping families of children with special needs find ways for their kids to be kids first – patients later.
This is done by providing tools, education, resources and opportunities to help improve the quality of life for medically complex children, their families and their providers, while also strengthening their circle of care.
To improve the quality of life for medically complex children, their families and their providers:
- Provide tools and resources to help in the day to day care.
- Provide social events designed for children with complex medical needs, but fun for the entire family.
- Provide bereavement events designed to celebrate the lives of children that have passed away due to medical illness.
- All of our events are ALWAYS free for the families we support.
- Educate providers and families on how to best care for medically complex children as a team/circle of care.
- Offer grants to home health providers for bereavement periods after losing a long term complex patient.
- Offer grants to families while in-patient by using the already trained home team.
Who is Casey Barnes?
Casey Erin Barnes came into our life on April 23rd 2006. She was a few weeks early, but just 3 days from being full term (37 weeks). Casey came early, but not easily. Marty (Casey’s mom) had a sudden and severe uterine rupture. Casey and her placenta left the uterus and floated in Marty’s abdominal cavity.
Luckily Marty and Tim (Casey’s dad) were close to the hospital, where doctors worked fast to get Casey out, but she went about 30 minutes with limited to no oxygen. The APGAR was 0 at birth, no breath, no heart beat. After 5 minutes the resuscitation team had a heart beat; after 10 minutes they had gasping breaths.
Casey’s primary diagnosis was HIE (Hypoxic Ischemic Encephalopathy). In addition and as a result of HIE, Casey was also diagnosed with Quadriplegia CP (Cerebral Palsy), seizures, many orthopedic contractures, as well as many other HIE side-effects such as hearing and vision loss. Casey was missing some basic reflexes, unable to suck, swallow, gag or blink. Without the ability to swallow, Casey’s air way was in constant risk for serious pneumonias that were often escalated to Acute Respiratory Distress Syndrome – ARDS. A feeding tube was required for all of her nutrition and medications.
There are many children with HIE, some not as serious as Casey, some much more serious. However, there are still not a lot of medical options available to help children with these types of brain injuries. The suggested methods are really just to treat symptoms individually and wait. If the patient and family want to take a proactive, more progressive approach, the cost is all out of pocket. Some treatment options like Hyperbaric Oxygen Treatment – HBOT and umbilical stem cells are not only costly, but they are rarely available, and in some cases available not yet approved for these complex children. We truly believe that these procedures, as well as her many doctors, nurses and therapies (her circle) made such a huge improvement in Casey’s life. Our hope is that more options become available and affordable for these complex and deserving children.
Casey had many serious complications, and a very hard start to her life. Regardless of the challenge or the pain, Casey fought through it all. Doctors originally gave a very grim expectation for Casey. Some said she would never go home at all. Others said if she did go home, she was unlikely to see her first birthday. Casey proved them all wrong. She had a huge, wonderful personality to go with her amazing will and strength. She was disabled; but she was definitely determined.
After a very full, yet very short life, Casey passed away on March 10, 2016 just before her 10th birthday. She will be forever in our hearts. She has inspired all of the efforts and programs you see here on Casey’s Circle. She touched many lives while she was here, and she continues to help medically complex children and their circles everyday.
We will continue to keep CaseyBarnes.org online as a way to look back over Casey’s life, we will keep photos and videos online there as well. We feel that keeping CaseyBarnes.org online helps serve as a tribute to her amazing spirit.