Love for Lukas

This is the amazing journey of my nephew, Lukas. He was born on December 22, 2016 with a healthy perspective from the doctors and his family.  You are about to meet the most resilient, strong, brave person that I have the highest honor of being his aunt and having him as my nephew. Little did we all know in December how he would teach us about compassion, humanitity, bravery, strength and love and the everlasting bond of family and friends. 

Lukas before his diagnosis and no symptoms had surfaced yet. He is 3 months old. 

Lukas two weeks later in the Pediatric Intensive Care Unit (PICU) at Nicklaus Children's Hospital in Miami, Florida. He was airlifted here after his diagnosis of Alexander Disease (Progressive Leukodystrophy) in West Palm Beach, Florida from an M.R.I. This diagnosis was confirmed on May 23rd, 2017 with genetic testing results. His first symptom was a seizure and they have increased since then with types, severity and now clusters which linger on from 15 minutes and they are now up to several hours at a time. His first time in the hospital was from April 9th, 2017 until May 11th, 2017. By May 18th, 2017 his condition had rapidly progressed and he was readmittted to the Pediatric Intensive Care Unit (PICU) at Nicklaus Children's Hospital in Miami, Florida. He returned home on May 25th, 2017 with Hospice 24 hours a day care. However, due to insurance this care has been declined this past week and the expense of Lukas's 24 hour home care is now an out of pocket expense for Terry and Kelly. The doctors have ordered that Lukas is in need of 24 hours care; this is heartbreaking, due to the doctor's explaining that Lukas has catastrophic epilepsy due to his rare disease and his medicines are always being modified to maximize his comfort and try to eliminate pain. I say try because hearing him squeal with the highest pitch to communicate his pain because he can't cry is heartwrenching. 

According to the United Leukodystrophy Foundation website, " The usual course of the disease is progressive, leading to eventual severe cognitive delays and spastic quadriparesis (spasms that may involve all four limbs). Feeding often becomes a problem, and assisted feeding (as with a nasogastric tube) may become necessary. Their head circumference is often enlarged. Children with hydrocephalus caused by Alexander disease usually have increased intracranial pressure and a more rapid progression of the disease. Generally, the earlier the age of onset of Alexander disease, the more severe and rapid the course." 

Terry and Kelly, Lukas's parents, have been told their timeline with Lukas is from two weeks, two months to two years. The disease is so rare they can not tell them exactly what to expect next.

Kelly holding Lukas lovingly and bravely in her arms. She has gone back to work part-time to maintain insurance for Lukas's care.

Terry cuddling Lukas in his arms. He has put his schooling on hold for the summer to be with Lukas.

Lukas and Kelly sleeping tenderly with the comfort of each other's presence. Lukas needs ice packs on his head and stomach to support the tylenol he receives for his fevers. 

Daddy holding Lukas up at the age of 5 and a half months due to not having muscle strength and control from his extremely rare, progressive and fatal, neurological disorder.

They are cherishing every moment together. 

I spoke with Terry and Kelly and expressed that Lukas, Terry and Kelly are in the loving thoughts, hopeful prayers, and amiable hearts of family and friends near and far acorss the state of Florida, states across the country and in countries acorss the world. To show them our unconditional love and support during this most timing need, I ask you sincerely with my heart to please share Lukas's story to educate those you surround dearly to your heart as we do with Lukas, Kelly and Terry. If you are fortunate enough to give a monetary donation towards Lukas's medical costs from the hospital, daily medications, daily hospice care and to support with his funeral expenses we would be forever grateful for your generosity.

Lukas before symptoms

Lukas before symptoms

Lukas before symptoms

Lukas before symptoms

Lukas before symptoms

Lukas after onset of symptoms


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Organizer and beneficiary

Nicole Gulli 
Cape Coral, FL
Terry Smith 
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