Lincoln’s Light aims to shine awareness on SPG50 to raise funds for ongoing research.
About
Trying to find the words for the unimaginable seems impossible, but here we go…
We are Cody and Jordan Medeiros, and our son is Lincoln. He is 1 of 100 in the world affected by SPG50.
When we were at our 20-week anatomy scan, we were told that Lincoln has an abnormality of the brain - ventriculomegaly. We spent the second half of the pregnancy in a stress-induced state as we attended numerous office visits accompanied by various testing and procedures. We were told that Lincoln had mild ventriculomegaly that seemed to be isolated as no direct cause had been identified. He would have an 8% chance of having severe cognitive impairment.
At six months old, it was observed that Lincoln’s head growth had slowed and we were informed that he has notable microcephaly. He was meeting his developmental milestones only slightly behind his peers. But as he grew older, it became more apparent that he was falling further and further behind.
He later had an MRI scan that revealed several abnormal structural findings of the brain. We were told that these findings, though abnormal, were all non-specific and that they still could not identify the cause. We were instructed to continue with weekly early intervention along with speech, physical and occupational therapy.
We decided to pursue genetic testing, and in October of 2023, the future that we envisioned for Lincoln was taken away from us. It is heartbreaking to know that the skills that Lincoln has worked so hard for will be taken away from him.
Our Mission
Because SPG50 is an ultra-rare disease, it can be very difficult to find information online. There are already a few incredible organizations that have made it their mission to spread awareness on SPG50 and AP-4 deficiency syndrome and they have made HUGE strides in research.
We decided to create Lincoln’s Light to establish a presence in the Pacific Northwest in the US.
Lincoln’s Light aims to shine awareness on SPG50. Our mission is to raise funds to support ongoing research, and ultimately, to find a cure.
Our Vision
In the future, we envision Lincoln’s Light as being able to provide resources to families affected by SPG50 to ensure that every child with this debilitating neurodegenerative disease has access to timely treatment.
Additionally, we would like to connect the rare disease community in the Pacific Northwest so that we can share support and resources amongst one another.
