Two years ago my daughter was diagnosed with Congenital Myotonic Dystrophy, a very rare genetic condition for which sadly are no treatments or cures. Lyla is now 3 years old and walking, although not totally independently. Her speech is also developing very well. We’re extremely proud of her as she is doing great considering her physical weakness. However, CMD is a progressive condition which means it will get worse over time. It affects the respiratory system and the heart as well as being a muscle wasting condition. We want to raise as much money as possible to fund further research into the rare condition, not only for Lyla but for all children affected by CMD.  On 28th September 2019 my friend and I are jumping out of a plane at 15,000 feet. We’d like to start fundraising for this event to raise funds for research into Congenital Myotonic Dystrophy. All the funds raised by this event will go directly to Lyla’s charity, LoveforLyla #lovesomeonerare. This charity funds research solely into Congenital Myotonic Dystrophy. Thank you to everyone who has donated so far, nothing is to little. Please also share this with your friends and family so we can raise awareness as much as possible. LoveforLyla #lovesomeonerare