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!
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.
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!
My son was diagnosed with growth hormone deficiency 7 years ago. The MAGIC Foundation has been an invaluable source of information and support, whether through their web page, their annual educational convention (which we've attended three times), or their very active Facebook groups. We were fortunate to have health insurance that covered my son's treatment without dispute, so we didn't need to call on MAGIC's insurance specialist; but it was nice to know help was available if we had needed it.
My son had just finished his last test to confirm diagnosis & determine treatment options when our Dr. gave me a list of support groups. "Magic Foundation" stuck out to me. I didn't call any for a few months. Then the bullying started. The questions & pressure of treatment options & schedules became overwhelming. I reached out to this foundation via fb. They called me immediately. The instant response & feedback made me feel better. Then they understood me. That made a world of a difference. They were moms just like me. They had little ones just like me. They were able to support & celebrate with me. We began following their videos & discussions. Even my son felt consoled knowing he wasn't alone. This foundation literally kept us sane & together. It has been an up to down to up journey. We are so grateful for the Magic Foundation!
I remember when I found MAGIC: it was November 2002 in the middle of the night-the only opportunity I had time to research online. Back then, Internet resources weren't what they are today. The middle of the night was my only opportunity to research because during the day I was constantly feeding my daughter or taking her to numerous doctor appointments.
The night I found the MAGIC website and read about a child with RSS changed our lives.
Since then, MAGIC is our #1 priority for charitable donations. I hope every parent who is struggling with a child who has a rare growth disorder finds this organization.
We tell people "that is when the clouds parted and the sun came out" for our family. The resources MAGIC has provided us are amazing: medical, emotional, and financial (help with insurance issues) not to mention the life-long relationships!
Thank you MAGIC!
The information provided by magic in relation to our daughters diagnosis of russell silver syndrome has been invaluable. Helped us argue for appropriate protocols to be followed for treatments and much less stressful hospital admissions as a result. Being able to link in with other families going through similar experiences has literally been a life saver! Thanks for the handbook...the website...the social media and all that you do for families like us MAGIC xx
The MAGIC Foundation has given my family so much information and support regarding our daughter's growth hormone deficiency. Without it this foundation I would have felt very overwhelmed.
MAGIC Foundation has changed my life. I first went to a convention for adults with growth hormone deficiency about 10 years ago. Before that I had never met anyone with panhypopituitarism. The support and friends I have found through them has been incredible, I no longer feel alone in this. Over the years I have come to depend on their annual convention to help me feel good about myself again. I realize that others experience the same issues I do and they truly understand! I worked as a division consultant for them for a couple of years and saw first hand the difference it made in other people's lives.
My daughter was born premature. She has struggled to gain weight since day one. She's been tested for so many things trying to get answers. It was until I found MAGIC when she was 4 that I found help. My daughter is considered SGA. They are a wonderful support for advice with my daughter's healthcare. A wonderful resource. I'm so grateful for their service. I try to share whenever I can!
Magic has been an incredible resource. It's provided information a about my son's diagnosis that would of taken months to find out, connected me to other parents for support and even physicians that our knowledgeable of the his rare growth disorder.
Before I found the MAGIC Foundation, I was lost. My daughter was "just a preemie" and we were continually being told to "wait and see" well I had a feeling there was something more. Once I found Magic, I found my answers, I found community and I found acceptance.