Service Dog for Clara!

 

Hi! My Name is Janna and I am Clara’s mom. Who is Clara? She is a miracle!

 

When Clara was 6 months old she was diagnosed with a Genetic Condition. We were told that Clara might never walk, talk, see, hear, or eat without a feeding tube. Clara was born with holes in her heart and had multiple seizures as an infant.

 

Clara has spent much of the last 6 years in the hospital. She has been in physical therapy, speech therapy, and occupational therapy all of her life. Clara has had several surgeries since she was born, including neurosurgery.

 

But Clara has never let any of this stop her! She is a kind-hearted, hard-working, perseverant child with an attitude of gratitude. She is the first to help someone in need, the first to comfort someone who is hurting, and the first to celebrate others when they have a victory.

 

But that’s not all! Clara took her first steps shortly after having neurosurgery! Clara talks…and especially loves to sing. Clara can see! After 2 ear surgeries, Clara has now passed a hearing test! One hole in her heart spontaneously closed. Another is closing! Clara learned to swallow and has not needed a feeding tube! And, Clara hasn’t had a seizure since she was an infant! The best news of all is that Clara started Kindergarten this year and is on track with her peers!

 

It has been an eventful year, both good and bad. This year Clara has had some tough setbacks with her health. She has been to the hospital 7 times in the last 4.5 months. Clara has an unexplained situation where out of the blue her whole system shuts down. Her Endocrinologist calls these episodes “metabolic crashes”. We have been unable to determine with certainty what is causing these crashes.

 

Claras last metabolic crash was 2 weeks ago and it was really bad. She threw up 23 times in about an hour, and even began vomiting blood. To add insult to injury, we came home from the hospital to 72 separate bills from Vidant Hospital. They wasted no time. Clara has bills from Vidant, Duke, UNC Chapel Hill, and Akron Children’s Hospital.

 

This week Clara traveled to UNC Chapel Hill for a brain MRI. The results show a spot on her pituitary gland. It is possible that this spot is causing Claras metabolic crashes. We are awaiting a consult with Clara’s Neurologist and Endocrinologist. We will soon know if a second Neurosurgery is in Claras future.

 

I really believe that we rob others of the opportunity to share in our victories when we don’t let them in to the struggle with us. It takes courage to share that we are struggling with Claras bills. Vulnerability is hard.

 

What about Medicaid, Disability, and other resources like Trilium? Well, we don’t qualify for ANY assistance. I’ve tried. I’ve spent hours filling out the paperwork. I’ve spent hours appealing decisions. I was spending so much time trying to find assistance that I was missing my kids childhoods. Ultimately, we are the classic middle class that makes to much to get assistance, but not enough to actually pay the hospital bills.

 

Why not get a job? I would love to! Alas, the nature of Clara’s medical frigidity prevents me from being able to be far from her. If she has a metabolic crash I have to administer an emergency injection within the first 10 minutes. The school nurse is authorized to give Clara the injection, but she is only at the school on Tuesdays and Thursdays. So, I’m stuck at home (which btw is only 6 minutes from the school). Me not working could actually save Claras life.

 

I summary, this page has been set up to help us with medical bills. We were on top of her bills until Clara started digressing again last April. We are firm in our resolve to steward any financial help with integrity. Money will first be used to catch up on current medical bills. We will also set some aside in case Clara’s doctors determine that she needs another Neurosurgery.

 

Lastly, we are hoping to save for a Diabetic Alert Dog. A DAD is a service dog that will be able to detect chemical changes in Clara’s body and alert us before a metabolic crash begins. I will finally be able to sleep at night! Claras life depends on me being alert and able to respond quickly if she has trouble. A service dog will keep the night watch for me and hopefully keep Clara out of the hospital by giving us extra time to respond. In the end, we will have fewer medical bills if we have a service dog.

 

Thank you for being willing to help us. We had a few friends ask us how they could help us financially, and setting this page up seemed like the easiest way. We look forward to sharing Claras journey with you!