We spent the first 10 months of my daughter's life in and out of hospitals and emergency rooms. No one could explain the mysterious and frightening eye movements, loss of one side of her body and even losing the ability to hold her head up and swallow. She was treated for acid reflux for 10 months. We were ordering formula through a pharmacy at $40 a can, taking prevacid and Zantac but these episodes continued. A couple of EEGs and MRIs showed no seizure activity. As a mother, I knew something was wrong. My daughter was diagnosed with AHC in December 2012. We were scared, relieved, and confused. Doctors told us there was no real treatment and only about 300 cases in the US. We should contact AHC foundation for help. This foundation was all we had for support and answers. Everyone involved with this foundation bas been so helpful and all are dedicated to find a treatment and hopefully a cure. I've met and spoke to other moms who know exactly what I've been through and can share my pain and frustrations. Our kids with AHC are one in a millon and so is this foundation!!! With a little recognition and extra support this foundation would be unstoppable!
My 22 year old son has AHC. This foundation has supportive to us since he was properly diagnosed at age 6. They have helped through offering advice and assistance. The people are awesome!!! We ask everyone to donate to this worthy cause.
AHCF is the most dedicated group of parents I have ever had the pleasure of associating with. From the first phone call 11 years ago to now President of AHCF Lynn Egan, when my daughter Lisa Marie was first diagnosed to today, they have always been there to support, answer our questions and or find someone who can, or just listen as we cry over how devastating this disorder is.They are non stoppable in their quest to find the resources we so desperately need to find a cure for this rare and debilitating disorder. I Thank You all!
I am the current president of the AHCF and I have been involved for over 20 years. My daughter was diagnosed in 1991 at 10 months before there was a foundation. It was another year before I spoke to a parent who understood. The foundation provides a wealth of knowledge through it’s website, literature and conferences. The foundation supports families worldwide, assists in connecting families with other families and physicians in their area, raises awareness, and raises funds for research. I will continue to work with AHCF until there is a treatment and ultimately a cure for AHC.
My Granddaughter, Melody, was diagnosed with AHC at 18 months (Sep 2012).
She has had some issues with muscular contractions / stiffening / limp in her arms, legs, eyes, and mouth since birth, but nothing that anyone could document well or even diagnose. One doctor told us that she had a lazy eye and not to worry about it.
At six months she had a full body episode (she had no head control, she was unable to move her arms and legs like she was supposed to and was having difficulty swallowing due to her tongue pushing food back out like a newborn) and this was a child that had been trying to crawl just the night before. Her hospital stay was one week and EEG, MRI's etc. gave no answers. She "snapped" out of it and she was sent home with anti-seizure medication. On this medication she had more episodes and while they were not as drastic as the full body episode, she still would lose control of an arm or leg or both which was very frustrating for her as she was determined to be "normal". We took her off the medication and while the episodes didn't quit they became less frequent and were minor.
During this time we searched the internet for something that could point us in the right direction as the Doctors were as baffled as we were. We found many things that didn't quite fit and the doctors ruled them all out.
At twelve months she had another major episode like the one at six months. Again, no answers despite massive testing.
At this point I must say that her neurologist was WONDERFUL and continued to do research trying to figure out what was wrong with Melody.
When she had another major episode at 18 months, her neurologist again walked us through all the symptoms and asked numerous questions about her minor episodes as well. It was then that she was able to diagnose Melody with AHC.
It was wonderful to finally have a name and the beginnings of an understanding of this genetic condition, but the find out that there was no cure and not much research was disheartening. Sometimes it's not so great to be a "One in a Million Kid".
Further research brought us to the AHC Foundation where there was a wealth of information and better yet, we discovered other families who were going through what we were. We weren't alone in this!
Melody is now 27 months old and while she had another major episode a few weeks ago. We are able to handle it so much better because we now know what we are dealing with.
We have spread the word about AHC to all our friends and relatives and hope to continue educating people about this condition and help raise money for further research and perhaps someday, a cure!
We would still be in the dark about this condition if it weren't for the AHC Foundation. Keep up the great work!
This is an organization working to support families suffering from a severe disease which because of its rarity has not had much support otherwise. The organization also aims to support research in the field to help conquer the disease. I have been with them since the organization was founded in the early 90's and have been thrilled to see them grow in their activities and impact.
I am extremely impressed with the passion and dedication of the board members of this foundation, and with the care they take to be a well-organized and smoothly-running small nonprofit. They have funded critical research for this rare disorder, research that may not have otherwise been possible, and which has already led to a major advance in our understanding of the genetics of this condition. I expect that they will fund future research providing the best chance for more effective treatments, or someday a cure, for AHC. I attended portions of the family meeting in San Franscisco in June 2012, and was struck by how well the presentations and services seemed to match the needs of the families attending. I am very excited to be part of the medical advisory board of the AHCF.
Our daughter had been diagnosed with AHC this year, 2012. It s a scary and disheartening experience to be part of a group of families who deal with an extremely rare disorder. AHCF has been a great hub or information of many kinds. Social media, data, networks of families, research, and fund raising. Our family has only been courageous enough to sample these resources, but we have received a great deal of warmth and welcoming from those we have been in contact with. We find the director to be energetic, and passionate about funding himself out of a job. He is supported by capable people who share his enthusiasm. The organization has a contagious energy, that I know we will catch when we develop our courage to do so.
My niece has AHC. I flew to San Francisco (from Boise, Idaho) to help w/ AHC Annual Convention in June 2012. Any help/volunteering/donating of funds is ALWAYS greatly appreciated as this is a very rare condition.
My son is 19 years old and has ahc. We have been in this fight alone until we found ahc foundation. It is wonderful to be able to talk to when days are hard and ask all the stupid questions which other sometimes laugh or just looked puzzled. We have become more and more involved and would like to have the world know who we are and help with our cause!!! Jenny Renfroe in Roswell, ga
Great parent support and very informative. Also provided us with medicine when we ran out. There hasn't been a time when i reached to them for something and have not been responded to in an absolutely positive and helpful way.
AHC is very rare and difficult to diagnose. Families often feel lost and concerned once their kids get diagnosed. AHCF offers support and education to families and patients in a very professional yet friendly way.
I have been personally involved with the Alternating Hemiplegia of Childhood Foundation Inc. (AHCF) for many years as an active AHC research member with the University of Utah under the guidance of Dr. Kathryn J. Swoboda. AHCF is a small foundation made up of dedicated and committed AHC parents of affected children with this disorder and through their time and dedication with the foundation these parents have brought the AHC world together in the USA and internationally. As a result of the many years of supporting research focused on finding the cause for this disease, we now have a gene responsible for this disorder. AHC affected families rely heavily on AHCF as a source of support and for the latest research updates.
The AHC foundation has provided my family hope and guidance in dealing with my daughter's rare disorder and all the associated issues. The support and knowledge of the foundation is incredible.
My grandson was diagnosed with AHC at age 1. We were encompassed by feelings of sadness, concern and fear of the unknown. AHC has provided us with the knowledge, resources and most importantly, a community of people who truly understand.
I'm the Medical Liaison and Coordinator for AHCF. i started volunteering for the Foundation in 2003. At the time there were limited resources and information for the families and professionals. We have grown into an active and focused Foundation and have made a concerted effort to raise money to move research forward and recently have found the first gene responsible for the disorder. This affects 70% of the patients, so we are even more determined to find the remaining genes and also research treatments for those affected. At the same time we have increased AHC awareness and education of families, professionals and the public through our website, conferences, literature and outreach efforts. I'm proud to be part of such a passionate and supportive organization.
It took 9 years before our child was diagnosised wit AHC, we were handed a sheet of paper and told "this is the information I have on this disorder" and the doctor sent us on our way. We reached out to the ACH Foundation who quickly embraced us as part of the family and shared resources that we in turn have shared with our doctors. Dealing with a rare disorder means that the majority of Doctors have no exposure and as a client we are tasked with finding out as much as possible. The AHC foundation has been ground force for us as a family while we learn and deal with our daughter's AHC. Everyone in the Foundation is passionate and willing to help at anytime.
Would be lost without Ahc. Have been instrumental in providing knowledge of this rare disorder.
I have worked with a number of foundations in coordinating academic research support. I have found the AHC Foundation to be committed to supporting research, very thoughtful in how they spend the funds they receive from donors, very engaged in the research they support, and their board members are a pleasure to work with. They do an excellent job of providing both personal support to families and children and bigger picture support to the longer term goals of improving diagnosis and treatment for those with Alternating Hemiplegia of Childhood.
The AHC Foundation is a great resource for both professionals in the medical field and families who have a child with this condition. They are a compassionate group of people who work very hard for this community. They help connect families to one another as well as to researchers and physicians who are active in the community. For a small foundation they have continue to make a large impact.