
Alden Quinn Greer
Donation protected
After suffering a series of seizures that brought us to the ER, we learned that Alden is diagnosed with a rare neurological condition called polymicrogyria (PMG) which is caused by abnormal structural development of his brain from before birth. This condition is irreversible and lifelong. In addition to seizures, Alden may suffer from potential developmental delays as he grows. There is a spectrum of outcomes among children with PMG. Despite Alden's irregularities, the brain is an incredibly complex, interconnected and adaptive organ so we hope for the best while we try to prepare for our new reality. Some patients do not experience the full extent of impairments and go on to live "normal" adult lives. Others will suffer from significant speech and language delays, impaired motor development, cognitive and emotional delays as well as behavioral problems. Up until this point, Alden appeared to be developing quite normally so we would have never known something was wrong had it not been for the seizures. Only time will tell what the outcome will be for Alden.
The immediate next step is focused on gaining control of his seizures. Unfortunately, Alden's case is proving to be difficult and we have not yet found a successful anti-seizure medication. We find ourselves among the unlucky 1/3 of patients with refractory epilepsy where medicines don't work well, or at all, to control the seizures. Therefore, Alden continues to have 8-12 seizures per day. We are grateful to be working with a specialized epilepsy team at UCSF to find the right treatment. Subsequent next steps will include early evaluation for therapeutic support as well as introduction to a keto diet.
Many have asked us how they can help. There is a lot we do not yet know but one way we could use a hand is with food and/or food delivery services. We've also set up this gofundme in case you may wish to contribute to some of our unforeseen needs that will likely arise in the months and years to come.
Thank you for your love and support.
Organizer
Erica Fox
Organizer
San Francisco, CA