Support Luke Tanner's Fight Against GSD IV

Dear family and friends have encouraged me to create an opportunity to support my son, Luke Tanner, now 16 years old, as we navigate his current fight against the genetic disease he was born with, Glycogen Storage Disease (Type IV). After not developing and thriving as a typical infant and the discovery that Luke's liver was enlarged and diseased, Luke received a portion of my own liver via side-by-side live donor transplant. His biopsied tissue was confirmed by Duke University to be GSD IV. This particular type of GSD is very rare, and there is a lack of medical research and guidance for medical professionals to consult when treating symptoms as they arise. Luke suffered from many, many serious infections throughout his childhood due to being immune suppressed. Much of his life has been spent as an inpatient and in constant pain.

In 2015 to 2017, GSD IV caused a large tumor to erode Luke's cervical spine causing, in effect, his head and spine to separate. He emerged from spinal fusion surgery wearing a Halo device for six months to fuse the spine and prevent permanent spinal cord damage.

After several years of recovery and "minor" complications of GSD IV (pancreatic infections, neuropathy, lymph node swelling, chronic pain, and extreme fatigue), Luke just enjoyed his first summer as a junior counselor at UC San Diego's Knock Around camp. Reeling with happiness after finally having a typical childhood summertime experience, Luke was sadly diagnosed with mycoplasma bacterial pneumonia, landing him in the hospital again in early August (2024). A precautionary echocardiogram surprised us all when it showed heavy growths of unknown nature weighing down a valve of Luke's heart, causing the heart to overwork and blood to back up (regurgitate) into the heart. Luke was immediately treated with targeted antibiotics for weeks as an inpatient at Rady Children's Hospital San Diego. The growths on the heart did not respond to antibiotic treatment, leading cardiology and infectious disease experts and specialists to conclude we were not looking at an infection.

After two months as an inpatient surviving complications such as deep vein thrombosis causing dangerous blood clots and intense pain, Luke's echocardiograms showed that these growths had spread quickly across the heart and had attacked three valves. Surgery was imminent but timing was essential as the cautious surgeon didn't want to work on non-repairable tissue and make matters worse. Luke's body decided the timing for us as his aortic valve ruptured on 9.29, causing him to go into complete heart failure. After an eight-hour emergency surgery, Luke became the recipient of one mechanical mitral heart valve and two carefully repaired valves (aortic and tricuspid). He is still in critical condition at Rady Children's Hospital in the cardiac ICU, being very well cared for but not out of the woods. He has lost a dramatic amount of weight and is, of course, very frail.

I've been asked to start this GoFundMe by kind acquaintances who would like to support Luke's future journey as it has been confirmed that the growths on Luke's heart are GSD IV glycogen deposits, which means something triggered them to grow rapidly across the heart within a very short period of time, and it is likely that they may continue to do so and will destroy his new mechanical valve and newly repaired valves. Rady Children's metabolic, genetic, gastrointestinal, infectious disease, immunology, hematology, cardiac, and rheumatology specialists have encouraged me to take Luke to additional specialists across the country for further testing and possible treatment. This will mean time away from work (my FML is exhausted) and travel/lodging expenses. Additionally, although our private insurance covers all basics, our co-pays for hospital stays, repeat visits to specialists, and medicines now have reached thousands of dollars. Also, Luke will need additional support equipment when he arrives home to heal, including a specialized bed and bedding, a personalized wheelchair, a personalized chair, and equipment that enables him easier access to vehicles for transport to medical appointments. At this time, we understand that his insurance will cover just a portion of these expenses and should cover all of his home nursing care. Luke is supported by my income only.

My family, friends, Luke, and I thank you for taking the time to read this and appreciate your thoughts and prayers for Luke. Those that know him see his thoughtful, kind, and bright spirit and what a huge heart he has for others that suffer constant pain. He befriends his doctors, nurses, and other inpatients and encourages them to keep fighting and to stay strong. He has personally struggled this time around with "why me?", and there is no good answer. He's had lows where he has asked for no intervention as the pain has been too much to bear even with medical management. His days are a mixture of boredom and panic except for wonderful visits from loved ones and friends when allowed. We are personally shocked that he had the strength to make it through this last surgery and were preparing ourselves for possible goodbyes.

Hopefully, this disease continues to be studied and cured. Duke University is taking the lead here in the US. Luke has contributed to their research and continues to do so. Thank you for your kindness and support.

Leah Kent for Luke Tanner