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Amy Prater is pictured with her husband, Joe. She is currently fighting Chiari Malformation and Syringomyelia. There is no cure, only HOPE!
Neelieth Ramos is 5-years old and was diagnosed with Chediak Higashi Syndrome. She needs a bone marrow transplant to survive.
Devin was born with Ring 9, a rare chromosome disorder, and has surpassed many expectations - he was voted Homecoming King this year and is pictured receiving his Honor Roll certificate. Devin hopes to connect with others in the rare disease community living with Ring 9.
Becky is pictured with her son, Asher, and was diagnosed with fibrosing mediastinitis in 2002, which is a fungus that attacks the organs. This disease suffocates from inside as scar tissue blocks and crushes major organs and arteries. She was given 10 years to live - the FM affects her heart, her superior vena cava was 100% occluded and right lung barely functions. There is no cure and very limited treatment options for this rare disease.
Alex Cumberland has Coffin-Siris syndrome, and was clinically diagnosed at two years-old. In 2012, she was genetically diagnosed with CSS as a result of genetic testing in Holland with Dr. Santen. She is 17 now and is a firecracker complete with meltdowns and attitude but her mother, Helen, says she wouldn't have her any other way. They currently have over 160 families around the world in their support group on Facebook.
Sersia Ohra Stott was diagnosed with a rare brain disease, idiopathic intracranial hypertension (IHH). She started to lose her vision, but did not think much of it at first. She has been through two spinal taps and has continuous headaches and fatigue.She firmly believes that life continues, and she must keep going on as a working mother, and strives for normalcy for her children. She continues to take each day as it comes and prays for those who live with or died from a rare illness.
Darlene Wood's 9-year old daughter, Kahlea, was born with a rare disorder called Coffin-Siris syndrome. It causes a lot of developmental delays, autism, and moderate intellectual disorder. She is always happy and eager to help mommy, and is a huge inspiration to all who know her.
Shirley J. Keeler has Chiari malformation and currently, there is no cure for it. She also has two cousins living with CM and Shirley notes this rare condition is not an easy thing to live with - you just do your best to put on a brave face.
At 2 years old, Anneliese has been given a difficult journey in life. MRIs of her brain show progressive cerebellar atrophy - her condition is getting worse. Her family lives with no prognosis, no treatment options, and little hope that a cure may be available in time to save their child. Anneliese's family is working toward Whole Exome Sequencing, which could provide a diagnosis for their little girl.
Estle Lawson was diagnosed with Idiopathic Pulmonary Fibrosis in March 2013. IPF is a rare fatal lung disease - the only option was a double lung transplant. A hospital nearby had an ECMO machine that could keep him alive until he could get the transplant, but unfortunately by the time was known to the family, it was too late. Three weeks after being transferred to that hospital, he lost his battle. IPF is a cruel disease that literally suffocates a person to their death. There needs to be awareness for not only patients, but medical professionals as well.
Howard Wright is 62 years old and has osteogeneses imperfecta. Currently, there is no cure.
Elif Gamze was born with Osteogenesis Imperfecta, also known as Brittle Bone Disease, which is a group of rare disorders affecting the connective tissue and characterized by extremely fragile bones that break or fracture easily (brittle bones), often without apparent cause.
Zachary has Aarskog-Scott Syndrome. It's a very rare genetic disorder that is prevalent in our family. He also has Metatarus Adductus and Congential Ptosis.
Our sweet baby boy Lukas was diagnosed with a rare genetic syndrome called Shwachman-Diamond Syndrome. In severe cases, the syndrome is fatal. Lukas remained in the neonatal intensive care unit all 5 months of his life and despite all the medical challenges he endured,
Lukas had the love and strength to SMILE.
We love you baby boy! Fly High Super Lukas!