In a previous post which can be found below, I described how Lucy was left nearly completely blind in both eyes as a result of a large left frontal hemorrhage in February. The hemorrhage caused downward herniation, putting bilateral pressure on her optic nerves along with prolonged (~18 hours) elevated intracranial pressure. A hard fall on the right side of her face at the time of injury likely created a traumatic optic neuropathy in her right eye.
In response to my post, we received incredible support from the X community including some interesting ideas on how to help Lucy. To that end, I thought to make a more targeted outreach to the community for any advice, ideas or input from experts in the eye, optic nerve, and brain or otherwise who can help her recover her vision, which remains her most challenging limitation both physically and emotionally.
Below, I provide some background on her vision and treatment to date. We are incredibly grateful for any ideas you may have. Our goal is to help Lucy and others who have suffered a similar fate by crowdsourcing ideas from the X community.
Background
Initially, both of Lucy’s pupils were maximally dilated and unreactive to light. Slight light reactivity came back to both eyes in the weeks after the hemorrhage. Initially, she appeared to be able to perceive light in the left eye but not the right. The slight right eye pupillary reactivity decreased to zero approximately six weeks after the injury.
Because of the severity of her vision loss and the absence of any other viable therapy, we received emergency FDA authorization in May, three months after the injury, to attempt a novel treatment: injection of Lucy's own mitochondria into her eyes. Details of the procedure and the decision-making that led to our decision to do this therapy are described in a preprint manuscript linked here:
https://t.co/k7cQZgAGdS
The principal rationale for the use of mitochondrial injection was based on her imaging. Optical coherence tomography showed that Lucy's outer retina and photoreceptors were fully intact. The damage was confined to her optic nerves and inner retinal neurons that process visual signals and carry them to the brain. The goal, therefore, was to rescue and enhance the function of her neuronal tissue as much as possible. Animal studies have shown that mitochondria delivered intravitreally cross the inner limiting membrane and are taken up by retinal cells.
After careful research into the potential benefits and risks which we believed, after careful analysis, to be low, we chose intravitreal injection in an attempt to place mitochondria directly on the surface of her retinal neurons.
Within two days of her injections, Lucy’s pupillary responses improved in both eyes. Importantly, she experienced no inflammation or infection. Visual evoked potentials measured weeks later improved, indicating stronger signal transmission from her retina to her visual cortex.
After the procedure, Lucy began reacting to pupillometer and visual examinations when previously they did not disturb her. Because Lucy cannot yet describe precisely what she sees, her increased reaction was itself an important indicator of change. Pupillary responses decreased after a few weeks but remained above pre-injection levels.
Given the success and the limitations of this strategy (among them: sourcing mitochondria from muscle biopsy is not a great long-term solution), we are exploring other ways to isolate and administer Lucy's autologous mitochondria, which we are now isolating from autologous stem cells derived from fibroblasts, a process that takes six or so weeks and requires significant management of the cell culture.
While transplanted mitochondria may improve the function of existing neurons and supporting cells, they are unlikely to result in optic nerve regeneration. Lucy's retinal ganglion cells have already suffered severe atrophy, so even in the best case this strategy has limitations.
In the last two weeks, Lucy's daily visual rehabilitation has begun to produce significant results. She can now reliably track objects both horizontally and vertically when before she could not. At first the objects presented to her had to be illuminated to be seen. More recently, she can track projected images and unilluminated objects.
Lucy is far from having functional vision so we are very open to ideas and potential solutions.
We welcome ideas posted here on X as well as emails to [email protected].
Thank you!
@DovySimuMMA@ufc@grok due to the commotion it is hard to make light of what chimaev did or didn't do with gwagon, is this just related to tax maneuvers or what?
@stockes76@CNN They also failed to mention that policies that the current president helped put in place many moons ago created fatherless households in order to qualify for wealthfare
@ElonMuskAOC @HymnStitched Yes and the will to make pro economical decisions as well as be accountable for them fully like Eisenhower was fully accountable for D Day invasion in writing...instead of passing the responsibility off parading in vagueness...most president's egos won't allow for a bad economy
@Justin_Gaethje For those with no reading comprehensive skills...what is meant... is obviously Glover doesn't want to stop fighting and doesn't want the fight stopped by doctor TKO or by his corner since this is his last hurrah...but due to the damage Glover took Justin wanted it stopped.
@nathaliejacoby1 His choice on how he chooses to protect or not protect himself, even the cdc director mentioned it does not assist in stopping the spread. Think of it as a pretherapeutic opposed to vaccine, since honestly it is not a vaccine containing pathogens as we historically defined them