Jackson’s mom describes the journey to his diagnosis with Krabbe disease (an LSD) at 4 months old, including the moment when the medical team delivered the diagnosis. She is glad so many clinicians were in the room because they got to ‘see him in all his perfectness’ and establish baseline.

A bereaved mother speaks courageously about how she has sought and found support following the death of her son. There are things she did early on — “I was taking it hour by hour” — and challenges she gave herself to make sure Krabbe disease didn’t take even more from her, such as buying baby presents for friends. “I grant myself grace…. I still want to make Jackson proud, so he will never have a mom that quits. … If I’m here, it has to count.”

The mom of a baby with Krabbe disease recounts her son’s end of life. It was anticipated and peaceful, and yet ‘it was a total shock.’

The mom of a little boy with Krabbe explains her decision-making process in deciding not to treat/intubate her son, when in a previous instance she had decided to treat/intubate. As his condition deteriorated, the questions she asked changed. (An excellent example of parental thinking around decision-making.)

The mother of an infant with Krabbe disease describes her growing appreciation for the palliative care team and the ways they showed up for her. With them, “You could exhale. … We could build to comfort and familiarity with them. … When they came into the room, I didn’t have to be On.”

The mom of a baby with Krabbe describes the way she considered her decision-making in different emergency situations (related to his breathing), and working with the EMTs. “It was like being in a sadistic game show. Which option do I pick?” As his condition progressed, her decisions changed. (This video is complicated but clear.)

The mom of a boy who died of Krabbe Disease describes the small team of people she invited to his service: his pharmacist, his PT/OT people. “The people who saw us in our home setting.” She grieves the broader community of people he never got to meet but fights the regret and gives herself grace for keeping his world small.

Timing is everything. The mom of a boy diagnosed at 4 months with Krabbe disease describes what types of information parents can handle in the early days with diagnosis: clinical information early, then they build a capacity to think more broadly about finding support. “If they had anyone in the hospital when we were having our longer stays, when we were not in a scary place, but just in a waiting and testing place, I would have loved to have learned more.”

“Did you ever not just feel like you are more than one person? I was like Jackson’s mom is at home. Jackson’s advocate is here [in the hospital]. Jackson’s mom is a hot mess, and she has a foul mouth and a quick temper. And Jackson’s advocate [with the doctors] is professional, direct, and driven. And this is the person that serves him best.”

“As a parent, I definitely wanted some action items. I was not okay with go home, and we will follow up with you later. There was zero sense of urgency. As Jackson’s mom that was not okay.” Jackson’s mom describes her quest to get as much info as possible, including about experimental treatments, and her displeasure that insurance and her child’s pediatrician were gatekeepers to some of this. There was some tension with the pediatrician. “I asked him if he thought that I was being unrealistic. I said you understand I know that there is not a cure. You understand that I am not putting him through anything that is unnecessary or painful. But knowing all the options helps me contribute to his quality of life.”