Help Aidan Get Well
Help Aidan Get Well, diversifying efforts through fundraising and education to find a treatment for Hypophosphatasia, with continued care, decreasing the mortality rate, while creating a better quality of life for both children and adults afflicted with HPP. Raising public insight and awareness, by promoting education with definitive knowledge about a rare, incurable, genetically inherited, sometimes debilitating bone disease, Hypophosphatasia. Unifying patients, while engaging research centers, and empowering doctors and medical centers through informative acquaintance and financial support. We are a non-profit 501 (c)(3) 27-3545689 organization.
Hypophosphatasia is a rare and sometimes fatal inherited metabolic bone disease. In infants it can lead to death. In children and adults HPP has life changing abilities, causing constant pain and frequent no trauma fractures, (stress fractures). Wikipedia offers a very informative look into this disease of mystery. Their website offers a definition, causes, diagnosis, (which every one has wanted defined), symptoms and solutions to help with the effects until a treatment can be found. Read more about Hypophosphatasia.
Aidan is a courageous little boy who at the age of two, after a year of misdiagnosis, was diagnosed with Hypophosphatasia. At the time Aidan was diagnosed, HPP (for short) was almost unheard of. There was no information for a child in Aidan's age group, in infants the mortality rate is fifty percent. The anominity of Hypophosphatasia causes misdiagnosis, sometimes being confused with brittle bones, osteogenesis imperfecta and rickets. Aidan is sharing his personal journey, allowing us to put a face with his illness, Hypophosphatasia. Aidan is our Ambassador and our constant inspiration for Help Aidan Get Well. He is opening up his world of frustration, mystery, pain, and uncertainty in the hopes that a treatment for Hypophosphatsia can be found. When we started this journey Aidan was two and a half, he is now ten. Help Aidan Get Well, originally started in search of a doctor for a rare incurable disease. After realizing there were more children and adults in the world going through the same ordeal, suffering with this same mystifying illness we decided to keep the website and start a non-profit. Please take the time to read Aidan's story. It is informative as well as touching. Another favorite on the website is the "Letter from Mom". Mom provides a lot of answers to many questions we receive in e-mails. You can also read about Aidan's trips to Shriner's Hospital in St. Louis.
Aidan is now on Facebook and Facebook causes, as well as Caring Bridge. We ask and urge each and every one of you that are on Facebook to add Help Aidan Get Well (Fight Hypophosphatasia) to your likes and to please join our cause. The more likes and cause members we have, the more we will get noticed and bring awareness to this disease. There is a link on Aidan's Current events page. Please feel free to come visit, you can also leave a comment for Aidan. We also have a group page as well, Help Aidan Get Well (Fight Hypophosphatasia) Group. We have several people with Hypophosphatasia stop by and not all are children. Some are adults. There is also a discussion link. Feel free to start a discussion. We check the site everyday. Aidan is also on Twitter. A button for easy access to his Twitter profile is also on his current events page.
We have had many requests for a place to send donations, that link is also at the bottom of the current events page. Aidan turned 10 in September; wouldn't it be great if we could raise $10,000.00 for his belated birthday gift? That would be $1,000.00 for each year of his life. Is there a better way to show unconditional love? No amount is too small and all is greatly appreciated. Won't you be our birthday surprise? This gives us all year to do this. Just think of the people we could educate, and the media resources we could use to do it. Think of the research we can help to fund. What if your donation is the one that educates the right person, or funds the research that finds a treatment? Think of the lives you would affect. Our fundraising theme is "Chipping Away at a Cure" featuring chocolate chip cookies. You could also use "Chips" of any kind. These items can be sold at a lot of events, yard sales, bake sales, and backyard stands to name a few. Landscaping businesses could perhaps have some type of fundraising event, featuring wood chips. We encourage children to get involved, after all it is one little boy's quest for a treatment and to make Hypophosphatasia a well known medical term that is the foundation for this non profit. If you are a Boy Scout, Cub Scout, Girl Scout, Brownie, honor student, or any other school organization, hosting a fund raiser would be a great way to earn a merit page. We will also give honorable mention for your efforts on our Sponsor's page. We can also list you on our Current Events page giving your effort more notice. You can contact us by e-mail at findacure@helpaidangetwell.org
There is nothing worse than going to the doctor and hearing the words, you or your child has a rare incurable disease. Initially you are distraught with shock. After the initial shock subsides, you begin with the questions. Unfortunately, for Hypophosphatasia patients the answers are few and hard to find. Even when presented with answers, you want to do all the research you can to find your own answers. You begin the search and are baffled even more with the lack of resources to find that information. You seek and cannot find comfort to settle your nerves and give some direction to your future. We at Help Aidan Get Well strive to change that. Hypophosphatasia patients deserve that comfort and those answers. We hope to educate and change the world to make them accessible. We hope to raise funds to put them there. Our biggest obstacle is presenting an unknown to the world. Added to this is the fact that Hypophosphatasia is so unknown it is often misdiagnosed, therefore we really do not know how many people are out there with this disease. Even if you do not want your picture on the website or do not want to write something about yourself, perhaps you could just allow us to post your first name, your age, your state and when you were diagnosed. If you have lost a child to Hypophosphatasia we encourage you to honor their memory by placing them on Aidan's Angels page. If you are suffering from or diagnosed with Hypophosphatasia we encourage you to join Aidan's Hypophosphatasia Friends page. Alone we will fail; together we CAN change the world. Please join us in our fight. Thank you.