More of Aidan's Story

Aidan's illness is a fight against time. Hypophosphatasia is incurable. In infants the mortality rate is fatal. In young adulthood, it is fifty-fifty. There isn't much knowledge in Aidan's age group, because there is not enough information to base a study on. The best hope is to bring awareness to this disease and to find a treatment. Aidan's bones can begin to break. He can lose all of his teeth and at this point, we are not sure what else. The faster we find a treatment the faster we can help a little boy get well. Please help Aidan get well. Aidan's journey began when he was two and a half years old and will continue as we fight to get answers, treatments, and people on board to research and question every bit of what we know for what it is or what it could be and how it could be different. The child has been through a lot. He is a trooper though. Aidan's disease is rare and there isn't much known. The only doctor that we know about, that remotely knows anything about Hypophosphatasia is Dr. Whyte at Shriner's Hospital in St. Louis in which we continue to make the journey out to see every couple of years as indicated. Aidan's latest trip to St. Louis was in July of 2011 at which time Aidan under went more testing in hopes of finding more answers to this rare disease.

The most important thing we have learned in Aidan's journey is the need for knowledge, resources and research. We are determined to try to change that. We recently received our 501 (C) (3) status. This organization will be devoted to children and adults with Hypophosphatasia, to encourage and fund research projects until a successful treatment can be found. To promote education and awareness to Hypophosphatasia. Please continue to check Aidan's website, to see the exciting things happening as we take this journey. We will keep you updated on Aidan's medical condition as well as what the future will hold for him. Please continue to e-mail us as well. We recently received an e-mail from another mother whose child has Hypophosphatasia and didn't know where else to go. She was having the same problems we were in finding information. She found Aidan's website to be a comfort to her.

Aidan turned ten this year and we thank all of those that have helped us and prayed for us along the way. We appreciate each and every day we have with Aidan. We are truly blessed that something in his little body is fighting some of the symptoms of Hypophosphatasia. However, we do see slight changes that indicate the future may not be what it is today. One of the things not mentioned by Mom, she wrote the medical information on the site, is that Aidan has two heart mummers and a hole in his heart. We are being told this has nothing to do with Hypophosphatasia, but honestly who knows. If the disease puts a strain on your body, who knows what body parts that could include.

Aidan is now on Facebook, Help Aidan Get Well (Fight Hypophosphatasia), Help Aidan Get Well (Fight Hypophosphatasia) Group, and Twitter, user name Helpaidan. Aidan is also on Facebook causes. Please stop by, say hello and share your story with us as well. There is currently a discussion board open for anyone who wants to share as well as simply leave a message and anyone who wants can reply and jump in. Aidan is getting a lot of friend requests; hopefully some of those friends are Hypophosphatasia children or adults. I can't emphasize enough the importance of YOU, letting the world know you are out there. There is success in numbers. We need to let the world know that there are kids and adults that need the world's help so we can get help for them. Please, please, come aboard and help us Find a Cure (treatment) for all of our precious Hypophosphatasia community. My heart goes out to the parents who have lost a child to Hypophosphatasia. Their stories are just as important. We learn from every story. We need to comfort each other. Perhaps we could get some answers to the questions through the research team. We could take questions with us to St. Louis and then post the questions and answers we receive. Even though this is one little boy's story, this IS about every one with Hypophosphatasia. We are sharing our knowledge as we gain knowledge in the hopes of finding a treatment for everyone with Hypophosphatasia. Won't you share your story. Help Aidan Get Well is asking you to help us obtain the goal of finding a treatment and educating the world about you. Remember, we can't get help if the world doesn't know we exist and need help. Please join Aidan's team. I apologize that this plea may be repetitive, but it is that important.

Aidan is now an older brother to Bryce, Grayson and Carson. Aidan can't wait for his little brothers to grow so he can teach them how to play boy stuff. He is a very protective big brother.

A lot of things are happening since this web site was created. Please check out Aidan's current events.

Thank you for taking the time to read Aidan's story.

How To Contact Us

E-Mail Us At
findacure@helpaidangetwell.org