We love the work AHCF is doing for AHC families! They have work tirelessly to support AHC families and further AHC research. They have supported us and given us lots of information to help us along this wild and crazy journey.
I was invited to attend a Family Meeting in Indianapolis in July 2016 (I live in Northern Alberta Canada) so I could share our story about our daughter, Danielle, who sadly passed away in 2013 after living for 36 1/2 yrs. with AHC. She was believed to have been the 3rd person in Canada diagnosed in 1979 with this disorder and we clearly charted an unknown path with her. I came away from the meeting having shared our story and having learned so much about the tenacity of the parents and children who battle this disease. The Foundation is made up of an amazing group of people , including parents. They all give so much love and care to each and everyone they encounter. I was a stranger to them but felt like part of the family by the time I left. My one big regret is that Danielle never got to benefit from the incredible work that is being done to fight AHC. She was definitely there in spirit though as I chose to speak on the anniversary of her 40th B-D and she lifted me up. I trust that my message will give the parents the strength to keep going - there will be an answer some day & may God bless everyone who is looking for that answer.
Our daughter (22) was diagnosed with AHC six years ago. AHCF has been funding research for this rare disease for over 20 years. Their funding helped medical researchers identify a common gene mutation which led to more research on the brain, molecular models and drug compounds. This work, in helping AHC, may also help other brain diseases. Every two years AHCF organizes a family meeting which connects families from around the world and the medical community. We are grateful to the board - a dedicated set of parents - who make it happen.
I am the mother of a 31 year old daughter with AHC. We have recently returned from the family meeting in the USA from New Zealand. How great it was to meet other people wth this condition and to see how hard the board members and parents work to educate and help us in all aspects of this disability. There is a wealth of information they have brought together for everyone to share.
As a parent of a 23 yr old son with AHC, I fully understand the tremendous void this organization has filled, and continues to fill, in assisting families through emotional support, awareness of medical advances, ideas relating to solutions for day to day problems on such things as adaptive technologies, how to work with school systems on preparing a useful IEP, navigating the bureaucratic nightmare of medicaid, etc. They work to coordinate medical efforts to find a cure (or keep abreast of potential avenues of research) by working with multi-disciplinary doctors. Being such an extremely rare disorder that receives little attention from researchers, they provide some hope in organizing efforts that can hopefully provide some relief to the afflicted individuals and their families. I have been involved with this organization from its inception and know that they perform a vast array of services that may seem minor but are critical to maintain some degree of sanity and realism to the families. Sometimes just venting is needed, other times they will help hook up individuals with another family that is going through similar issues. With low cognitive skills and often extreme retardation, explaining what is happening to the AHC kid having, for example, a terrifying first experience with menstruation, can lead to feelings of inadequacy, loneliness, and depression. The family conferences that I've attended are always uplifting. Sometimes just reassuring new parents that they can make it through has a profound effect on their outlook. When your average family doctor or pediatric neurologist knows less than the man on the moon about AHC, it is a great relief to get assistance on where to find more information about this disorder. Being able to call and get a cheerful, understanding, and non-judgemental person to help explain what the future may hold or what medicines have seemed to be helpful is a great relief. Before this organization arose, it was not unusual to go through doctor after doctor claiming it's epilepsy (as in the early years with my son) and having him doped up on phenobarbitol despite no evidence of epilepsy on any EEGs. We need all the help we can get. This disorder is unlikely to have a day, week, or month named after it to promote awareness; Bono, any remaining Beatles, or Springsteen are not going to do a televised fundraiser for AHC. Living with it is a lonely ordeal that would be brutal without such an organization. I could go on but....by now I hope you get the point on how important this organization is to a group of kids who are marginalized just because they are few in number, and therefore unlikely to bring fame and fortune to researchers, drug companies, etc.
AHCF has been a lifesaver to me and my family! The tireless efforts to raise funds for research and raising awareness of the disorder speaks volumes about those involved in the foundation. Truly would be lost without them. We can SEE the progress they are making for our kids and adults with AHC!
This is a truly amazing organization. For a group that represents such a small population they do so much great work. Directing the fundraising and research has achieved the discovery of the gene that causes this rare neurological disorder. This discovery would not have happened if not for their leadership.
This foundation provides immense value to families of children affected by AHC.
This organization always keeps me up to date with the process of finding a cure for Alternating Hemiplegia, in which my child suffers from if I need any information they are their to quickly get the information I need for my child Doctor
Alternating Hemiplegia of Childhood Foundation (AHCF) is an amazing organization! Our daughter was diagnosed in 2012 with AHC and we are so thankful that AHCF has been able to help us every step of the way. When your child has a rare disease, often pediatricians don't have enough experience to guide patients. AHCF does a tremendous job with patient and family support, as well as supporting researchers. They do so many fundraisers and direct SO much money back directly to the specialists who have active, ongoing research. It is encouraging to know that people are fighting for our kids.
AHCF is an amazing organization; they are a quality foundation run mostly by volunteers. They are 100% committed to all AHC kids and to funding valuable research. It is a testament to their commitment to end AHC-a majority of funds raised go directly to research. In addition to being on the leading edge of research, they are invaluable to AHC families! They have a long history of providing answers and help to families who often had no where else to turn.
My son who is now almost 25 was diagnosed with AHC at age 6.5. He also has a life threatening seizure disorder. It was a long process of seeing Dr. after Dr. and it had never even been heard of where I live. This foundation was very helpful in supporting us with useful information that helped both us and our Drs. It was great having someone you could talk too and they understood what you were going thru as they were also having similar experiences with their child.My son has been very stable since 1998 and hasn't had a major seizure since then. His episodes of paralysis are infrequent and totally unpredictable. He still walks but his balance is getting increasingly worse and he has very little stamina so uses a wheelchair for walks and outings. Communication is a major problem for him but he has come a long way. He is happy, has a great sense of humor. Please support this organization. We really need this research to help our children.
My daughter was diagnosed with AHC in October of 2013 at nine months old. A quick google search led me to the foundation. They are understanding and supportive of the children and their families. The fundraising efforts are amazing and with more recognition this group will be unstoppable. Meeting others at the family conference earlier this year was so helpful in understanding this diagnosis and the foundation made that possible. Madelyn's mom, Mt Pleasant SC.
AHC is a very rare neurological disorder that needs money for research and without the AHCF getting money from private fundraisers the AHC patients and their families wouldn't know about the gene mutation that causes AHC to occur in patients.
The AHC Kids Foundation needs your money to find a cure or at least a treatment.
My grandson, Zachary, is now eleven years old. He was diagnosed with AHC before the age of one. I am so proud of how my daughter, son-in-law and his four siblings care for him. Zachary keeps going even when his body won't work correctly. It was a relief to know that the money raised for AHC research showed that Zachary's condition is not hereditary. My thanks go to all of the families who have fund raisers to continue research for this rare disease.
During infancy, our son displayed abnormal posturing, constant irregular eye movements, and hemiplegia that progressed into frequent attacks of full body paralysis lasting for days at a time. As months passed, he was frequently misdiagnosed and received numerous tests that all came out normative. It took over two years to get a definitive diagnosis for our son and by the time he was finally diagnosed, our parenting had been in question and we felt defeated.
The day we heard he had AHC was bittersweet. For once, we had a medical professional that believed us and knew what was going on with him. At the same time, we were told that due to the rarity of the disease, only one treatment option was available and there would be no guarantee it would be effective at all. The relief of identifying the problem was overshadowed by many more scary and unanswered questions.
It wasn't until we came in contact with the AHCF that the feelings of loneliness and hopelessness slowly started to fade. We were able to have a support system of individuals who knew exactly what we were going through. Without them we wouldn't have had the opportunity for genetic testing that finally identified the mutation causing our son's disorder or known the treatment options available to our family.
The volunteers and individuals that make this foundation are amazing. They are proactive at increasing education and awareness, offer support, and truly care about all the children affected with the disease.
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!
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!
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.