Lincoln Dickerson and Leigh’s Disease

Update: Lincoln has now been in the hospital for 9 days, on Sept 11th he went in and they found out he had RSV. He had to be intubated and came off the vent 4 days later. His little body was in shock when he came off and it threw him into periodic shaking, non seizure related. He has now made it through those and he is still fighting. However he has lost most activity that we all are use to him having. Walking, talking, moving, eating-by himself, smiling and just the daily life of Lincoln. The news we got is that Lincoln’s brain volume has decreased since his admittance on September 11th. This is related to his disease. We are hoping following the MRI that the lack of activity is due to his body getting exhausted, and being on the vent even knowing what we know about the disease. He will be having a repeat MRI coming this week which will give more information. It isa terribly hard time for Lincoln, his parents and his family. The doctors told my sister that she needs to apply for the Make A Wish foundation and with the unknown, I am updating the gofundme and all donations will be put into a private account for Lincoln. Thank you all for the support, prayers, donations, gifts, and love. We are forever grateful.

I kept the original post’s story below.

I am creating this fundraiser in hope of being able to get my nephew, Lincoln Dickerson’s story out in the world. Along with any additional support that anyone sees fit, financial, supplies, prayers. My nephew was born on March 26, 2019, to his parents, my sister, Alyssa Dickerson (Summers) and her husband Dillon Dickerson. In March 2021, Lincoln had been getting sick and ended up in the ER with an unaltered mental status/loss of consciousness, and hypothermia. It was then noted as a seizure and with blood test results indicating high levels of lactic acid (lactic acidosis). He was transferred to Dayton Children’s Hospital and they said due to a prior hospitalization in October 2020 for an abnormal LA level they wanted to do an MRI. The MRI indicated white spots appearing around the basal ganglia region of his brain. The Doctors put a referral in for a consult with the Genetics Department to do further testing for Mitochondrial Diseases. The one that was mentioned was Leigh’s Disease/Syndrome. However, he was released 6 days later with no answers. It wasn’t until May 26th when he had another episode. He was readmitted for the same thing except now it included high LA levels, seizure, and low Bicarbonate levels. Then another similar episode on June 18th. Then again on July 7th, same thing except he became hypothermic after being in the hospital 3 hours and his BP dropped. He was admitted into the PICU where they started two IVs. The Doctors have been doing genetic testing since April, and for people who don’t know about Mitochondrial Diseases there are thousands so the testing can take weeks or up to several months. The Doctors completed his whole genome sequencing on July 12th while he was still inpatient. He ended up being discharged with some vitamins they wanted to start him on that are typically used to help manage children with Leigh’s syndromes but as of last night he was back in the ER and transported to Cincinnati Children’s Hospital. The results that have been explained are hard to hear as they are assuming it to be a Leigh’s-like syndrome. Leigh’s Disease comes in different forms and can be mild to severe. We are hoping and praying this is wrong and if not that it can be managed. He is still in Cincinnati and the genetics team has been working on a plan of care to help keep his levels stabilized. Aside from that when Lincoln is feeling good he is running around, he is happy, always smiling and loves being loud. He’s a Paw Patrol loving, mac n cheese and pizza eating, little boy. He enjoys baths, pushing his toys around, dancing with mommy, and spending time with his grandparents and cousins. Lincoln’s parents and his whole family are enduring a lot of pain and heartache over what they have been told to be preparing for. With all said, I am reaching out to everyone in hopes of receiving any assistance for my nephew, my sister and her husband to help take some of their stresses away and bare the weight for them as much as possible, given his current health condition and extensive hospitalizations it is unrealistic for them to maintain a job. Any money donated is intended to help with any financial burdens that have and will continue to ensue during the medical treatment plan/process to meet Lincolns needs, as he will now be receiving care in Cincinnati Children’s Hospital, which is over a hour away. I will be managing all donations, gifts, supplies that are donated to help keep things steady for them while they work on his care. My heart aches for my family and I only hope that with sharing his story we can get prayers for him all around the world and that when results finalize a diagnosis that the treatment will be a cure. I thank you with the sincerest heart for taking a moment to read about our precious Lincoln, and we are all very appreciative for all the love, prayers, and support given during this time. Thank you.