Lyla's history...

On April 4th 2016, at  7 months old, Lyla was diagnosed with a rare progressive genetic disease called Mucopolysaccharidosis or MPS. Further tests also confirmed she has the most severe form of MPS 1 called Hurler syndrome. If untreated, the disease causes severe physical and mental disabilities and children rarely live past the age of 10. Lyla has inherited this horrible disease because of a recessive gene in both Steve and I that's likely been passed down in both our families for generations. One copy of the gene (which we both have) has no impact but the 25% chance of two copies of the gene being passed on happened to our first born, little girl. The gene mutation means Lyla is missing an enzyme that breaks down sugar molecules in her cells and as a result they slowly build up and progressively damage every part of her body. Babies show little sign of the disease but as more and more cells become damaged, symptoms start to show. The first symptom in Lyla was a heart murmur noticed by her pediatrician at her 4 month checkup. Further analysis by a cardiologist confirmed Lyla has mitral valve prolapse, but there was no immediate need to worry because she would likely grow out of it. The second symptom noticed by Lyla’s mom was a sharp curve to her lower spine. When mentioned at her 6 month appointment, her pediatrician agreed and referred us to an orthopedic surgeon who said it would likely fix itself and if not we should return in 18 months. Luckily, Lyla has an amazing pediatrician who connected the dots that these two symptoms could be related and promptly called a genetic Doctor to get her opinion. The genetic testing was meant to "rule out" MPS.....
Here we are now, a few months later and after thinking our daughter's world had ended, but instead we are filled with hope and optimism. On July 25th 2016, Lyla will be receiving a bone marrow transplant from donated cord blood with a perfect 6 out of 6 match. Although it's not a cure, a successful transplant will stop most of the devastating effects of MPS and allow Lyla to live a pretty normal life attending school, playing sports, and hopefully going to college one day. Being given this chance is all due to her pediatrician, unrelated donors, and the amazing medical profession!

Thanks again to our wonderful circle of family, friends, doctors and all the donors out there. We are hopeful because of you!