Mason’s Awareness & Support for Osteopetrosis Network
This is a place for parents to obtain information and stories from other families who have endured the journey of Malignant Infantile Osteopetrosis. When we were diagnosed, we had no one who understood what we were going through. As we have grown, we have developed a very close knit group of families who have had children with MIOP. Some are here in the US, some are International, but all are loving people who want to support one and other. I will update this page as we gather more families together.
The stories are very personal and have a variety of different outcomes. If anyone is interested in speaking to an individual family, you can send an email through this website and we can arrange the communication.
Please see visit our MIOP Moms Facebook page and learn all about our families from Croatia, England, France, Peru, Ecuador and all over the USA.
Baby River Simpson Deig: On March 8, 2013, precious River earned her wings and joined our other angels in peace. Our hearts are with Summer and the whole Simpson family.
This love has not been born yet. Her sister Avery passed away from MIOP and Mom Summer is pregnant with a baby girl and is due Dec. 23, 2012 and is diagnosed with MIOP as well. She will be born and transplanted at Duke University. summer.simpsondeig@f
Kelptyn Jack: Kelptyn is a 22 month old who was diagnosed at 7.5 months. He has endured 3 transplants and the 3rd was successful thus far. He is currently experiencing some difficulty with his brain growing faster than the bone is remodeling. www.thehoneygrahams.weebly.com
Camille De Saedeleer: Camille was transplanted on June 19, 2012 in Belgium at 6 months old. Mom is Stephanie Stephanie.firstname.lastname@example.org
Anthony Dones: http://www.caringbridge.org/ny/anthony/
Nate Zimmerman: http://www.caringbridge.org/fl/nate
Joseph Kurt Parthenais: www.caringbridge.org/visit/josephparthenais
Brenna Clark: http://www.caringbridge.org/visit/brennagabrielle
Lilly Belle Kulungian: http://www.caringbridge.org/visit/lillybellekulungian
and then http://www.facebook.com/groups/77155229242/?ref=ts#!/video/video.php?v=2868247555597
Joaquin Albornoz: http://www.caringbridge.org/visit/joaquinalbornoz
Maria and Mom Dinka are from Croatia and Maria was transplanted at 8 months old with Mom’s Bone Marrow in Ulm, Germany by Dr Schultz. Maria is doing wonderfully and they are now back home in Croatia. dinka.baltic@faceboo
Eli Eckman: http://www.caringbridge.com/mn/eli