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.
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!
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!
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.
Because of MAGIC, my son is thriving today. He was one of the first members with Russell-Silver Syndrome and, now, Growth Hormone Deficiency. We have all learned so much about his syndrome and found support from people all over the world. The yearly convention used to be a great way for him to see others just like him. (He is older now, so he does not want to attend anymore.) There have been many ups and downs, but the people at MAGIC and its members are like a big family to us. And the guidebook from the RSS/SGA Research and Education Fund is a timeless resource with everything we need to know. MAGIC will always be a part of our lives.
The Magic Foundation provides support and information to families struggling to learn about their child's growth hormone deficiencies (GHD). There is no other group out there that does what they do, so we rely on them a great deal. Most people think GHD is just about height, but don't realize it's so much more - it affects all of a child's organs. Having a child with many other serious health issues (some life-threatening), we have spent over 16 years learning about many medical issues, but were lost when the GHD diagnosis came in... Until we found Magic Foundation. Please keep supporting this amazing resource for so many families!
My adult daughter with GHD attended a MAGIC convention with me about ten years ago. It was such an encouragement to her to meet other adults who had similar health challenges. Also, we got very good information about the latest medical research on Adult Growth Hormone Deficiency. MAGIC doesn't put boundaries on the assistance that they give to families. They try to help with whatever challenge we are facing: insurance, medical, social.
Magic Foundation changes my world. My son was born at 28 weeks at 1 lb. 14oz. He was 3% on the growth charts and not catching up. My pediatrician said he was "on his own growth curve". Fortunately, I discovered Magic Foundation one night at 2am as I was desparately looking for answers. As a result, I knew to contact a pediatric endocrinologist and our lives changed. Our son Jarod went from 3% at age 5 to 50th % on the growth charts in 3 years as a result of needing growth hormone injections. This affected other areas as well including immunity, muscle tone, eating, and development. Magic also answered insurance questions that we had. I am so grateful and thankful that I discovered Magic.
Our son Mason was born in November, 2011. No indications were given throughout the full term of pregnancy that any issues were prevalent. After delivery, Mason had difficulty breathing and was in Pediatric ICU for several days. After several tests it was determined that Mason was suffering from multiple abnormalities, one being congenital Panhypopituitarism. All of these thrust upon us a young couple with no indication of any issues along the term of the pregnancy is quite overwhelming. It requires a very quick lesson in medical terms, medical conditions, multiple doctors’ visits, administering medication, giving Mason daily shots, physical therapy, and educated family and our self’s. Struggles for our family are the rarity of PHP and information that is not available, The MAGIC Foundation was one place I turned to. I’m so thankful they are here.
When our son was born with a very rare disease we had nowhere to turn for support. When we found MAGIC, this all changed. The MAGIC Foundation has been there for us for the past 22 years. We attend their convention every single year. MAGIC is amazing!