When a family is expecting a baby there are often discussions around gender, names, planning for the future and of course hoping for a happy healthy baby. But what happens when you get news that everything is not good.
At 20-weeks gestation Maeve's parents received the news every parent dreads – a moment that no parent can prepare themselves for.
The doctors talked about a big word “Arthrogryposis Multiplex Congenita" (AMC) – a rare neuromuscular disorder. They threw around predictions ranging from a severe physical disability requiring palliative care to infant death before the age of one. It is a lifelong condition affecting multiple body systems. There is no cure for AMC. With this news their life was instantly turned upside down and the future was now so uncertain.
Maeve's condition is severe - affecting every joint from her shoulders to her fingertips and her hips to her toes. AMC results in the inability to move joints, underdeveloped muscles, and lack of muscle tone. As this condition is so rare “best practice” doesn’t exist; each case is so different from the next. Research is a vital part of her treatment plan. Maeve's parents also spend countless hours providing daily interventions for her.
Sadly, Maeve will require ongoing surgeries and therapies as her growing body constantly changes and works against positive progress. Maeve's story, although difficult, will be a long one.
Her parents are genuine loving and kind people who always put friends and family first. They are an inspiration for so many and are always willing to help others. Proud parents of three children now, they both work to support their community and foster good family values.
Maeve’s parents hope that she can become an independent woman with lots of attainable dreams and aspirations but she will require extensive care from her parents and many professionals to make this happen. Without this early and continued intervention Maeve will have no chance at independence – relying on others for just about everything in her life.
Your generosity will help with the many assisted living devices not covered by benefits; additional costs for occupational and speech therapies; exploratory and alternative therapies as research continues; travel and lodging expenses for ongoing out-of-town appointments with pediatric orthopedic specialists and a long list of expenses too lengthy to list.
Supporting a family of five is difficult at the best of times and now with the financial stresses that are involved with Maeve's physical disability it will put this family in a position that no one ever expects to be in. This is a life long journey for Maeve and her family.
“Uniquely Perfect”, just as everyone is, was the best way to describe Maeve. Her parents have started a facebook group with the same name to tell her story of love and hope – recording the journey of the struggles and successes. She has been an inspiration to her friends and family. Please let her be an inspiration in your life.
Your generosity will go along way. Please consider a contribution and sharing the campaign links among your friends, family and social media.
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