In 1994, when my two-week old son was diagnosed with panhypopituitarism (PHP), there wasn’t much of an Internet. Finding a support group for parents of kids with rare health conditions could be more a matter of luck than anything else. Maybe the new specialists who suddenly filled your days could point you in the direction of a group or two, or maybe they had other patients with the same health concerns. But maybe not, and then you ended up feeling pretty much alone as you navigated these new medical landscapes.
My son was in and out of the hospital a lot before he turned one, so I’ve lost track of many things during that year, including how I found out about MAGIC. But somehow I did, and somehow because of MAGIC I ended up having a long-distance call with another mom in Florida whose infant son had also been diagnosed with PHP. As the years passed, MAGIC helped me figure out how to effectively work with—and occasionally argue with—my son’s healthcare providers. MAGIC was my bridge to other parents who could tell me how they were dealing with their child’s PHP. MAGIC helped me understand how much the effects of PHP could vary from person to person, and why I needed to convey my son’s individual responses and symptoms to his doctors even when they wanted to find easy answers and explanations.
My son was lucky. He has received appropriate care for his PHP ever since he was two weeks old, and the effects of PHP are manageable. But it’s still a rare condition and its effects can look like many other health issues, and it can be easy for a doctor who is not paying attention to dismiss a parent’s concerns. I am appalled when I hear about doctors who still don’t understand that emergency PHP protocols can save a child’s life, that some kids go for years before they receive an accurate PHP diagnosis, that some parents are given incomplete or even wrong information about PHP even after a diagnosis is made. For these parents and their kids (and for the docs who are willing to listen and learn), MAGIC is a vital resource. MAGIC staffers and volunteers know the questions parents have, because they’ve had the same questions. If they don’t know the answers, they do their best to find out. And they let parents know there’s a whole community waiting to help them.
For awhile I was able to help moderate MAGIC’s Facebook group for parent of kids with PHP. There were so many posts from so many moms and dads whose kids had just been diagnosed with PHP. They were scared, they didn’t know what they needed to know, they didn’t know what this diagnosis would mean for their child a week later or five or ten years later. Sometimes, to try and reassure these scared parents, I would ask other members of the group to post pictures of their PHP kids. The response was always overwhelming. The wall would instantly fill up with kids of all ages—kids in holiday clothes or Halloween costumes or pajamas—kids who were happy and busy and active—kids from across the country and across the world--kids who had a rare health condition and who sometimes had setbacks, but who were kids first and PHP patients second.
MAGIC gave me that support almost 25 years ago, and MAGIC still gives that support and encouragement and guidance today. Is MAGIC magic? Yes, it is.
The magic foundation has been a blessing to our family! They have helped answer so many questions and a provided us with many resources to learn more about early puberty. They are my #1 go to. I recommend them any chance i get!
Magic is helping us so much. They're all so helpfull and Nice. I'm in Argentina. They send me the guidebook. they Made the free screening yo help with the diagnosis, and answered all muy question. Also they conected my son's doctors with the especifict especialist. Amazing Job. Amazing people.
Hola. Soy de Argentina. La gente de Magic nos ayudó muchísimo, no sólo con información sino con la contención. Me enviaron por correo la guia de SSR. Hicieron el screening gratis. Y actualmente están conectando a la genetista de mi hijo con uno de los mayores especialistas. Son increíbles. Ayudan en todo sentido. Muchísimas gracias Magic. Toda la información que tengo y que pude transmitir a los médicos de mi hijo proviene de ustedes.
This organizatiin is great. I had nowhereelse to turn when my son got diagnosed with Growth Hormone Deficiency. They provided tons of education and provided resources so we could afford the medication my sin needed to grow. They continue to be a source if support. When we needed to fi,d a new doctor there they were to point me i the right direction.
The Magic Foundation has been a great resource for our family! Three out of our five children have been diagnosed with a rare growth disorder and it was very difficult to find information about it. The Magic Foundation gave me the opportunity to attend their annual convention twice through generous scholarships. The conventions had informational sessions hosted by medical experts which helped me gain important knowledge that helped me better understand my children’s condition.
In 2012 we got a rare disease diagnosis for our 3 week old son, that included growth hormone deficiency. When you are stuck in the NICU, with all these big, scary sounding words to describe your sweet newborn and lots of unknowns about his future, you feel very alone. We found the MAGIC Foundation when our son was about 4 months old. We were able to speak to a mom whose son had the same diagnosis and she lead us to a social network support group hosted by MAGIC. We found hope! We found families who “got it”. We got to see other children growing and thriving. We were able to attend their children’s convention that summer and it was an absolute blast. We loved what they had for the kids who came, the speakers and specialist were phenomenal, and we made friends with other families with the same diagnosis. We are now 6 1/2 years out from diagnosis day and we still love MAGIC just as much if not more! They have been a foundational pillar of support, encouragement, and current information that we have yet to find anywhere else.
Our son was born very small and had many issues. Even after our genetics Dr tested him several times for another syndrome, we were still unsure and had many questions. Our OT therapist through Early Intervention mentioned Russell Silver (she had 1 other client who reminder our son of him). When I googled Russell Silver Syndrome, I came across the Magic Foundation. As I read so many similar stories so close to home I sat and sobbed knowing this must be it! I took him back to genetics and requested the test... what do you know it was positive! So I immediately contacted Magic Foundation and went to our first convention a few months later! Magic has been a HUGE blessing not only to us but to our son as well. We go to the convention each year for many reasons, but also so that he can be around other kids JUST LIKE HIM!! This is such a rare syndrome (many Drs have never treated an RSS child) that MAGIC truly is the best resource, support and network! I don't know what we would have done without this wonderful group! Love our Magic Family!
Wonderful resource for parents! MAGIC has helped in so many ways - education, support, referrals to top notch doctors that help to care for children with rare conditions. So thankful for MAGIC and all they do to support children and families with growth disorders!
Our genetics doctor told us about MAGIC and we have learned so much from their resources in only 3 months time. A robust support system, consisting of guide books, articles, a parent network and an annual convention. We are so fortunate to have found such an amazing resource.
The Magic Foundation brought so much hope and as well as knowing that we were not alone. At the age of 5 our son just stopped growing. At first we thought he was just growing slower than other children. When he turned 6 is when the doctor said she was concern about him. Just like others we started testing and found out that our son was diagnose with growth hormone deficiency. With the Magic Foundation we learn how to live life differently because of other families. But the best part with the Magic Foundation, it’s like having a huge fan base cheering each other on. My son was fortunate to meet a little girl through the Magic Foundation. Soon they became pen pals and now they are friends. We can’t take the Magic Foundation enough for welcoming our family and for helping us not to feel alone in this journey.
One year ago my son had seemed to hardly growing. After researching ISS, I came across the Magic Foundation. After going through the testing process and getting denied by insurance I felt hopeless. Finding the foundation changed my life. I discovered a discounted treatment option in Canada ( antiagingcanada.cc ) through their social media pages, otherwise treatment would have been impossible. Now one year later my son has grown 3 inches! Magic has changed my life, thank you!
MAGIC Foundation 01/18/2018
We are glad MAGIC was able to help you and your family in your time of need. The MAGIC Foundation only supports the use of FDA approved growth hormones, being obtained directly from a pharmacy or the manufacturer of the drug. Anti-aging clinics have not been known to supply FDA approved growth hormone products so please be cautious about where you obtain your growth hormone.
When my daughter was under a year old they diagnosed her with mccune albright/pfd . I was so lost and I came across this organization magic foundation they sent me information about the disease cleared so much up for me and I had spent endless hours on Google looking this all up I was terrified through this group I found proper information and not only that I found so many people that supported me to get through it all and find our peace in it.
I live in Australia, and giving birth to a son with AHC Adrenal Hypoplasia Congenital, not alot of help and information available to me. Then I found Magic Foundation. All of a sudden, on the other side of the world, there were people who could help, inform and educate me. Without this wonderful people who work tirelessly to raise awareness for our rare gene babies, people all over the world, wouldn't be able to connect with each other. God bless Magic Foundation.
The MAGIC Foundation has been so helpful as I navigate my health issues. I have a pituitary tumor and am testing for adult growth hormone deficiency (AGHD) and Cushing's disease. If it weren't for the MAGIC Foundation, I may have believed my (inexperienced) doctors who said that I am just overweight and need to eat less and exercise more. One of those doctors even recommended bariatric surgery, which will not help if either of these are diagnosed. I will continue to support this foundation with time and money!
MAGIC Foundation has been a wealth of information for us as we navigate a couple of new diagnoses for our kiddo. Very grateful for the online resources and the support forums.
Despite our local genetics trying to give him another diagnosis, our early intervention therapist mentioned Russell Silver because she had 1 other child who he resembled... when I googled this syndrome, I discovered Magic Foundation!! As I sat and cried reading so many similar stories by parents, I knew this is what he had and was later confirmed by the genetics dr. Magic Foundation is the only resource available for our son's syndrome and we are so very thankful to this foundation that works so hard for our families. We attend the annual conference to learn research updates, meet other families who relate and support this wonderful foundation! They truly are magical in our eyes! Without their experience, support, information and research.. I don't know what we would do!! You are family and we love you Magic Foundation!
When my daughter was diagnosed with Turner Syndrome and GHD I had a hard time finding resources to help navigate our new diagnosis. The MAGIC Foundation was a life saver. They helped me find doctors in the area, assisted with insurance issues, and just listened when I needed someone to talk to. Today, I am able to return the favor by helping new families find resources and tools when they are newly diagnosed. The first resource I give to new families struggling with a growth disorder is MAGIC. I know when they log into the website they will find what they need.
I found MAGIC in my search for answers to my daughters growth. When I had questions, they were there to help and guide me in the right direction. When I had insurance problems, MAGIC made phone calls and didn't stop advocating until I got the results I needed. I am so proud to be a member of the MAGIC family.
I found MAGIC by chance while one night frantically searching for information on my newly diagnosed daughter. I was terrified and had no clue what to expect out of the diagnosis of ONH/SOD. The ophthalmologist that diagnosed her was horrible and had nothing positive to say! Once I found MAGIC I found a group of people that have become a second family to me! We have gone to the conventions every year since and have made life long friendships. My daughter has a chance to be a part of a community of children/adults that we never would have met otherwise. The Facebook groups are an amazing resource. The conventions bring to us parents experts in the issues that we deal with daily. Most of us would not be able to see these experts otherwise and since most regular doctors don't know how to deal with her condition, this is invaluable! Thank you MAGIC!!
MAGIC has been a lifeline in a turbulent sea of fear for my family and many others. The conditions that MAGIC supports and compiles information and experts on are rare even to the doctors treating our children. The annual conference is an invaluable experience to gain information and meet people 'just like us'.
When my husband and I learned our 5-day-old son was born with Congenital Hypothyroidism, we had so much anxiety and so many questions. Our pediatric endocrinologist connected us with The MAGIC Foundation and it was a HUGE source of information and support. Not only were we able to get relevant information, specific to our son's condition, but I was able to learn about other growth disorders and read testimonies from parents and others who were experiencing the same feelings of worry, confusion, and anxiety about their child's future. I was able to connect with other parents of children with CH through the closed Facebook group run by MAGIC which has been a lifesaver. Knowing there are so many other parents out there in our exact shoes is so comforting and the support I've found has been overwhelming. It has reassured us so much that with treatment, our son will grow into a normal, healthy child and adult. I'm so thankful for The MAGIC Foundation and all of the wonderful information and support it provides. Because of MAGIC, I've gone from an anxious parent with a million questions to a fierce advocate for CH, armed with the knowledge to educate others and raise awareness. Thank you MAGIC!
You would think that as a parent you would know if something was wrong or off... You may think your doctor would notice... We thought he was just going to be short (like his Momma). We always asked, "is this normal?" And were told by the doctor (at every appointment), "He will grow, we will just keep an eye on him." Finally, when he was 12 years old and "heads and shoulders" shorter than his peers, I pushed the doctor to test for something and I wouldn't take no for an answer. It was then that Jordan was diagnosed with a growth disorder. And it was The Magic Foundation and the great people that we met through them - that have helped us understand and to not feel alone on this journey. I don't know what we would have done without them. We look forward to the convention every year - there's always something new to learn. They have been an extremely valuable resource for our family.
The Magic Foundation gave me my sanity back. Our 13 y/o son was diagnosed with panhypopituitarism last year. Our endocrinologist is great, but finding The Magic Foundation and thru them, meeting other families dealing with the same or similar issues have given us additional information and the confidence we needed to get thru the initial emotions of his diagnosis. The people are fantastic and the yearly convention is a must. So thankful for this organization and the people behind it. I'll forever be grateful.
Almost two years ago my child had stopped growing, and I was looking for answers. Through researching GHD, I was lucky enough to find the Magic Foundation. Through their Facebook page, we found a doctor who finally listened to us, was willing to test my son for GHD, and got us started on treatment. Since starting treatment, my 15 year old son has almost grown 7 inches and gained 33 lbs. Magic gave me the resources and knowledge to advocate for and help my child!