On September 3 of 2015, Lyla Rose Edgington made her debut onto life's court amidst cheers and love and great anticipation of what would be! Lyla's mom, Helen, is a gorgeous, sweet, blonde accountant who fell in love with Steve, the British tennis pro that captured her heart in Australia, married her, and moved to the USA where he is the tennis pro at Phoenix Country Club. Everything seemed perfect. On March 21 of 2016, when Lyla was just 6 months old, after a few symptoms were noticed by her pediatrician, Lyla was tested for a rare genetic disease "just to rule it out". On April 4th, the tests came back positive indicating that Lyla had MPS1. MPS1 is a rare, progressive disease that affects the cells and doesn't allow the individual to produce enzymes or do so in low amounts, and results in glycosaminoglycans (GAGs) accumulating in the lysosomes. The effects of this can be devastating, affecting all organs and areas of the body including mental development. The most severe category of MPS Type 1, known as Hurler syndrome, which Lyla has been diagnosed as having.
Helen and Steve immediately began working with physicians on a "game plan". The University of Minnesota (Masonic Children's Hospital) is known to have a group of doctors that specialize in treating and minimizing symptoms of MPS through stem cell transplant. After a skyping session between the Edgingtons and Minnesota Childrens Hospital, the decision was made to take Lyla there as soon as possible. The plan was:
1) over the course of 1 week in Minnesota to do the blood work needed to start the process of finding a stem cell donor, put in a feeding to tube for Lyla to maintain nourishment, and to put in a port for IV transfusions. 2) After that week in Minnesota, the Edgingtons would return to Phoenix where Lyla would begin, for the next 8 weeks, enzyme replacement therapy. Once the 8 weeks were complete, Lyla would return to Minnesota where she would receive 1 week of (medication only) chemo, followed by a stem cell transplant using either donated cord blood or an unrelated bone marrow donor. After the transplant, Lyla would have to remain for 100 days, infection free, and then could return to Arizona. 4) Once back in Arizona Lyla will hopefully live a pretty normal life
On May 1 Lyla, Helen and Steve set off for Minnesota. Once in UMCH (Univ. Minnesota Childrens Hospital), physicians also discovered that Lyla has Thalassemia Beta Minor (a condition that leads to anemia), which has lead to discussions about the best course of action for the procedures and the possible complications that might arise. However, plans are to keep on as planned, give or take a day or two!
This is a lot of info, and it's just the beginning...the path is going to be long. Lyla is tiny and fierce, and her parents are already warriors against this disease. All of the communities that surround the Edgingtons, here and abroad, are coming together to rally around them with support, love, and anything else that can lift them up. The Edgingtons are so grateful to have such a great "tribe" of friends.
(Thank you to Stacey K for helping us get this journal started and writing the above summary)