Leigh Disease (Mitochondrial Disease)
MY NAME IS JAGGER.
THIS IS MY STORY.
Jagger was born in September 2010. At birth, he looked like a healthy child. However, very early on he was not eating well nor gaining weight. He quickly fell behind on the growth charts. Jagger was also crying/whining a lot, sometimes 20 hours a day. We tried everything and everyone including our pediatrician was puzzled by what was going on.
While checking for a routine heart murmur in December 2010, a cardiologist found that Jagger has Hypertrophic Cardiomyopathy, a very serious heart condition. We were admitted the same day to the Cardiac unit at Children’s Hospital of Atlanta and the doctors ordered many genetic tests. Test results came back all clear and after 2 days we were allowed to go home the day before Christmas.
A few months later, Jagger was still not growing and his pediatrician was starting to get very worried about him especially since he showed signs of global developmental delay and his head was not growing either. Our pediatrician admitted us to the Children’s hospital again but this time to do a full check-up including an MRI, swallow study etc. Jagger was ordered an NG tube (for feeding) at that time and our neurologist mentioned the possibility of Mitochondrial disease due to the fact that multiple organs seemed to have been affected (brain, heart, stomach, muscle weakness etc.) This was the first time we heard the words “mitochondrial disease”. We had no idea that these two words would define our and Jagger’s lives from this day forward.
In August 2011, one month shy of his first birthday, Jagger had a muscle biopsy performed (ordered by a Mito doc) and a G tube was placed for feedings.
While the tube helped to get more nutrition, Jagger was still not well and started to lose some of the few skills he gained such as holding objects in his hands, holding his head up, even supported sitting and then in November 2011, we received the results (based on the biopsy results) that Jagger had Mitochondrial disease of unknown origin.
A week later, we were admitted to the Children’s hospital again for GI issues. On the 4th day there, Jagger got severely dehydrated as he was screaming the entire day. He ultimately exhausted himself to the point he coded and had to be intubated on the floor and transferred to the ICU. While in the ICU, we had a port placed in his chest for ease of future access needs and did another MRI. That MRI showed symmetrical lesions in the basal ganglia and we were giving the news that no parent wants to hear. Jagger has one of the worst most severe and terminal forms of mitochondrial diseases: Leigh Disease. If diagnosed before age 2, 95% of Leigh disease patients do not make it to their 5th birthday.
A few months later in early 2012, we started to notice Jagger was having seizures. We were told later he probably had seizures earlier in life, likely in his sleep however since he is on so many medications for his severe pain and muscle spasm, some of them may have suppressed his seizures so we didn’t notice them. However, over time as Jagger’s body got used to all the medications and as his disease progressed, the seizures became more apparent and more frequent so we had to give him another seizure medicine to try to control them more effectively. Despite all the meds and the new seizure medicine, Jagger continued to have between 5 to 25 seizures per day which was frustrating for us especially since every medicine he takes has severe side-effects and we always have to be worried and conscious about possible serious drug interactions.
Jagger is currently on hospice care to try to manage his symptoms, seizures and pain as much as possible. But, despite being on hospice care, Jagger still ends up in the hospital every 2-3 months due to respiratory distress. His muscles are weak and he often suffers from aspiration pneumonia and atelectasis.
In August 2014, we decided to temporarily relocate to Colorado to access Cannabis oil for Jagger for both pain and seizure management. Since all we can do at this point is to focus on quality of life, we decided that this was our last option trying to find Jagger some comfort. The trip to Colorado was extremely challenging and after several months of detailed planning, and six long days on the road we arrived in Denver exhausted but full of hope and excitement.
Since starting on the oil, Jagger’s seizures have reduced to less than 5 per day, his pain is managed, we were able to reduce some of his seizure medicine and he has become more vocal, interacting with us, showing clear signs of cognitive development. He has also gained more weight and gotten stronger. It’s been amazing to see Jagger smile and be happy and no longer spending most of his days sleeping or whining and screaming in discomfort. We are so very grateful to the Journey of Hope fund allowing us to move to Denver to find relief for Jagger and for the Flowering Hope Foundation who provides Jagger’s Cannabis oil.