September 10, 2024

“Your child has Krabbe Disease – a rare, genetic, fatal neurological disease.” At that moment, their dream turned into a nightmare.

Kasey and Alex were high school sweethearts who married in 2018.  They quickly got pregnant and were ecstatic to add to their family!  Dawson Luke was born July 16, 2019 weighing a healthy 8 lbs 2 oz.  Their joy was complete.  He was the perfect addition – all 10 fingers and all 10 toes.  He passed all his newborn screening tests with flying colors and for the first one to two months of his life everything was normal and fine.

At Dawson’s 4 month check up, the pediatrician became concerned as she conducted her routine exam.  Dawson was not meeting certain developmental milestones.  His head and truck control was almost non-existent.  Kasey confirmed that Dawson hated tummy time; he would scream and scream.  The pediatrician suggested that Dawson should see a neurologist, but despite the doctor’s concerns and recommendations, Kasey and Alex weren’t quite ready to take that step.  They redoubled their efforts to help Dawson strengthen his head and neck control.

His condition continued to progress and by his pediatric follow up appointment, Kasey and Alex were ready to follow the pediatricians advice and get Dawson in to see a neurologist.  At 5 months old, Dawson underwent countless numbers of tests – blood work, physical exams, and even MRIs – to determine the cause of his developmental delays.  He had to be sedated for the MRIs and this sedation triggered another symptom – spasms.

Also around this time, another symptom reared its ugly head.  His feeding times started to increase.  He would drink his meal and almost immediately throw it back up.  He wasn’t getting the nutrition he needed.  He endured even more testing, which produced no clear answers.  At 7 months, he was admitted to the hospital.  He could no longer eat.  He was losing weight at an alarming rate; by the time he was admitted he had lost 2 lbs, a huge loss for one so young.  He spent one week in the hospital; he received a nasogastric (NG) tube, one that goes up the nose, down the throat, and into the stomach.  It was used to deliver nutrients and medication directly to Dawson’s stomach.

On February 24, 2020, Kasey was at work when she received a call from the doctor’s office.  They ominously told her she needed to go home before they could reveal the results of Dawson’s testing.  With extreme trepidation, bordering on panic, Kasey drove home, meeting Alex who was caring for Dawson.  Gathered around the phone, cradling Dawson, they made the call that would forever change their life.  The doctor said, “Dawson has Krabbe Disease – a rare, genetic, fatal neurological disease.”  In a clinical dumping of information, the doctor relayed information about  the disease, the life expectancy, the lack of treatments, and the reality that there was no cure.  Leaving the reeling parents with the final advice of, “Keep him comfortable, and get him to an expert,” the doctor hung up, and their world shattered.

Kasey recalls being bombarded with intense emotions – shock, devastation, anger, relief of finally having a diagnosis, and fear.  As soon as the doctor hung up, she couldn’t stand it a moment longer.  She rushed outside, fell to the ground, emptied her stomach, and let out a scream that tore through the deafening silence.

With strength that far surpassed the strongest superhero, Kasey pulled herself together as best she could and fortified herself to deliver the devastating news to their parents.  She sent a simple text asking all their parents to come over that evening to discuss something important.  When they arrived, she and Alex shared the diagnosis.  Understandably, their parents were blinded-sided.  That evening, gathered around Dawson, they all wept and grieved together.  

The next few weeks were a grief clouded whirlwind.  With a prayer and a hope, Kasey and Alex drove Dawson five and half hours to meet with Dr. Maria Escolar, a pediatric leukodystrophy specialist at the University of Pittsburgh. Sadly, she confirmed that Dawson was too progressed to qualify for a bone marrow transplant.  All that could be done was symptom management and comfort care.  She evaluated Dawson and gave Kasey and Alex direction on how to best care for Dawson.  She also sent Kasey and Alex for genetic testing; that testing confirmed what was already expected.  They both carried the recessive GALC gene variant that could cause Krabbe.  This knowledge would be important in the years ahead as Kasey and Alex attempted to grow their family.  For now though, their focus was on Dawson.

Kasey, motivated by love, dedicated her time to caring for Dawson and researching Krabbe Disease.  She joined Facebook groups and read everything she could get her hands on.  She took seriously the recommendations from other family’s caring for children with Krabbe.  She gained knowledge and confidence about what questions to ask the neurologist and what medications and interventions to request.  Dawson was given a g-tube to aid in feedings, giving him the nutrition he needed to support his little body.  He was put on medications to help calm his nerve pain and muscle spasms.  

Shortly after Dawson’s official diagnosis, the country experienced the COVID-19 shut down.  Kasey was able to work at home during this time, which was a blessing because she was able to devote the necessary time to Dawson’s care.  Kasey’s sister-in-law, Cassidy, had recently graduated, and she moved in to help with Dawson’s care.  While they got into a good routine with Dawson, his care was unrelenting.  Every three hours, except for during the night, they administered medications, fed him through the g-tube, and changed him.  Dawson also needed to be suctioned almost constantly.  Because he had lost the ability to swallow, saliva and mucus built up in his mouth and throat, impairing his ability to breath.  Depending on the day, he would need to be suctioned between every 10 and 30 minutes.  They would sit with him in a steam filled bathroom in an attempt to loosen the saliva and mucus, and they eventually utilized a shaking vest to help move the gunk.  This went on every single day for months.

Dawson’s caregivers – Kasey, Alex, and Cassidy – were shot.  The never ending cycle took its toll.  Thankfully, they each found powerful and necessary outlets to relieve some of the stress and give a much needed break.  Kasey and Cassidy began crafting, and Alex took up woodworking.

Dawson reached his first birthday, and the family was grateful to experience this milestone.  A ton of loved ones came by to celebrate Dawson’s first birthday.  The party was Mickey Mouse Clubhouse themed.  He had his very own smash cake, and his parents helped him have a little taste of his cake.  While it was a joyous day, they knew their time with him was rapidly coming to a close.  

His condition continued to worsen.  He was put on oxygen and he needed to be suctioned more often.  By mid October he was very sick, exacerbated by a virus.  Hospice started coming frequently, and Kasey and Alex were urging their family and friends to come to say goodbye.  He had a brief rally at the end of October and got to experience his last Halloween.

On November 8th, Dawson passed away.  Around midnight, Kasey heard him make strange gurgling sounds, and she and Alex quickly went to him.  As they stood there, Dawson gasped, took one more deep breath, and passed away.  Even though they knew his death was inevitable, the reality was shocking.  They moved through all the arrangements in a numb trance, doing what needed to be done to care for their precious boy’s body.  

They made the brave decision to donate Dawson’s brain and tissues to Partners for Krabbe Research.  Home | Krabbemockup (krabbes.org)  After the initial shock of grief settled, Kasey became a stalwart advocate for the rare disease community.  She is a fierce supporter of newborn screening, and she is still active in the Krabbe community, offering understanding and advice to those still living with Krabbe.

Kasey and Alex’s life was forever changed by Dawson’s Krabbe diagnosis and death.  Dawson will always be part of their family and who they are.  Krabbe has had lasting impacts on decisions they have had to make about fertility.  We hope to highlight their journey with IVF soon.

In honor of Leukodystrophy month, you can honor Dawson and his family by purchasing some merchandise especially created for Dawson here:  Dawson Strong Line (huntershope.org)