The last few months have been extremely high stress for Bryce’s parents as they’ve had to take Bryce to appointments, sometimes multiple times a week. Bryce developed feeding issues and her mom, Nicholle knew that something just wasn’t right. It was discovered that Bryce had a severe lip tie and tongue tie and so a procedure was performed to release both. When the feeding problems didn’t resolve and Bryce didn’t seem to be making any developmental progress, Nicholle pushed for more answers which led to an EEG being performed to measure the activity of Bryce’s brain. This test showed that there was minimal brain development and an MRI was scheduled. On April 3rd, 2018, just 5 days after her EEG, Bryce went for a routine doctor’s visit and ended up being admitted to CHKD for failure to thrive and a feeding tube was placed. She had not gained any weight in 3 weeks and was only 8lbs 2oz. Her MRI was bumped up and performed on April 5th, and showed that her brain was underdeveloped. These tests also showed that she was missing her myelin sheath, a white substance that surrounds the nerves and is essential for proper functioning of the nervous system. Genetic testing was also performed but results would not be available until later. In the following month Bryce would undergo surgery to place a G-tube in her belly, a more permanent feeding tube. She could no longer take any feedings by mouth and started to have frequent seizures. Her parents would also be told that her liver was not functioning and she needed to have a liver transplant soon.
Fast forward to today, May 14, 2018, the day that everything started to crumble for Bryce’s parents. They received a call from the geneticist with news no parent ever wants to receive. The reason for all of the health problems Bryce has endured in her short life is because she has a terminal autoimmune disease, Aicardi-Goutieres Syndrome. It is at this time unclear how much longer Bryce’s tiny body will continue to fight. She also has another disease called CHAR syndrome, which causes a severe intolerance to cold and is very painful.
The reason for setting up this gofundme account is to raise money for Bryce’s parents to help them during this emotionally difficult, and financially straining time. Her dad, Jeremy is an independent contractor who has had to take off a lot of time from work in order to be with his daughter as well as to care for their 2 older children so that Nicholle can be with Bryce for appointments or whenever she has been hospitalized and vice versa. Nicholle is not currently employed because her whole entire world revolves around constant care for Bryce. With a grim prognosis, it is understandable that both Jeremy and Nicholle want to spend as much time as they can with their daughter as they have no idea how much longer they have with her. I can not imagine having to make a decision of whether to go to work, or spending time with my terminally ill child. This is a nightmare no parent ever wants to face.
Any donation, great or small, would be deeply appreciated with the utmost gratitude. If you are unable to donate, please share this on your Facebook profile so that others have the option to give if they feel they want to. Thank you for taking the time to read Bryce’s story. We will all continue to be as supportive as we can to Jeremy and Nicholle and their family.
Today Bryce had an appointment with the neurologist. Because her current seizure medicine (Keppra) isn’t working well to control her seizures, her neurologist wants to put her on Sabril. Unfortunately it will take a few weeks for the insurance approval, and so until then Bryce’s current dosage of Keppra will be upped. The Sabril could potentially cause some serious side effects, such as blindness, but at this stage it is far more important that Bryce be comfortable.
The doctors are setting up home healthcare to assist Jeremy and Nicholle, so there will be a home healthcare nurse Mon-Fri from 9am-5pm. In addition to that, hospice care will start for Bryce next week.
- Tiffany Rhoda-Lhotak
- Ashley Jones
- Irene Ortiz
- Cindy Mancini
Organizer and beneficiary
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