Hey Fairfield! A local family needs our help to spread the word about their 3-year-old son Cameron. He faces a rare neurological disorder called Alternating Hemiplegia of childhood, or AHC. Please take a look at this video, educate yourself and donate! We need to find a cure for AHC and need your help! Every penny counts as a way to support this life saving research. They were recently on News Channel 12 as well as other news stations – listen to there story here.
Al’s Angels is a huge supporter and they have raised over $70,000 since they started at the end of January – so amazing! The family is trying to meet a $100,000 goal to pay for a gene therapy project, which doctors say could lead to a cure for Cameron. Click here to to donate!
Hope for Cameron
A fundraiser is set at Pink Lemon Blue Lime in Westport on March 9th, where a percent of the proceeds go to finding a cure to AHC. Another fundraiser will be on March 23rd from 3-7pm at Brennan Shebeen on Fairfield Ave. If you would like to donate a raffle for the auction please let us know!
What is AHC?
- Alternating hemiplegia of childhood or AHC is a rare neurological disorder characterized by recurrent attacks of temporary paralysis, often affecting one side of the body (hemiplegia). During some episodes, the paralysis alternates from one side of the body to the other or affects both sides at the same time. It ranges from simple numbness in an extremity to full loss of feeling and movement. These episodes begin in infancy or early childhood, usually before 18 months of age, and the attacks could last from minutes, hours to even days and normally relieved by sleep.
- It is not something that will go away as an adult as the name suggests however for some the course of the disorder may change at different stages in the individuals life.
- In addition to paralysis, affected individuals can have sudden attacks of uncontrollable and at times painful muscle activity; these can cause involuntary limb movements, muscle tensing (dystonia), movement of the eyes (nystagmus), or shortness of breath (dyspnea).
- Alternating hemiplegia of childhood is primarily caused by mutations in the ATP1A3 gene. AHC almost always occurs as a new mutation. This gene connected with the disorder was only discovered in 2012/13. The identification of the gene for AHC should lead to a better understanding of the disorder and open new avenues for treatment.
- Mutations in the ATP1A3 gene reduce the activity of the Na+/K+ ATPase, impairing its ability to transport ions normally. Na+/K+ ATPase transports charged atoms (ions) into and out of neurons, which is an essential part of the signaling process that controls muscle movement. It is unclear how a malfunctioning Na+/K+ ATPase causes the episodes of paralysis or uncontrollable movements characteristic of alternating hemiplegia of childhood.
- AHC affects males and females in equal numbers. It is estimated to occur in approximately 1 in 1,000,000 births.
- The symptoms and prognosis varies so greatly from each person with AHC that there is no way of knowing exactly how it may affect them in their functioning. Disabilities from the disorder could range from mild to severe with everything in between. This also makes treatment difficulty as the affects are so vast. (I once heard a doctor on a video say that it is one of the most challenges disorders because it basically combines every type of neurological disorder into one so you are treating so many different symptoms).
- No specific treatment exists for individuals with AHC. Treatment is currently directed toward the specific symptoms apparent in each individual and avoiding known triggers.
- A medication that is not available in the US called Flunarizine has shown the highest effects of reducing the severity and length of episodes for many if these children.