As with many parents, we believe our children are very special, however in our case we jokingly say, "Eva is literally one in a million". Although she lives with an ultra-rare genetic condition Neurodegeneration with Brain Iron Accumulation (NBIA) BPAN WDR45, we choose to believe that as her parents, we have been given an incredibly precious gift - we get to witness our Eva's life. We know she has a purpose - it is being revealed to us daily. She has taught us so much and she continues to teach us so much about living and loving. Slow down, play, sleep, laugh deeply and cuddle with the ones you love. She is so very special; RARE would be inadequate in describing her. She connects with everyone she meets although she has never spoken a word. It is in this spirit of LOVE, that we continue each day to honor that connection, that we choose to love and live with hope not just for Eva’s health and happiness, we live in each day recognizing that save for the LOVE of family, friends and community, our story could never be written. Eva has brought people together, from all walks of life, who on a daily basis, provide us the much needed guidance and encouragement to always move forward with gratitude and share our experience, strength and hope. Let us be the community that supports Eva and all individuals and families affected by Neurodegeneration with Brain Iron Accumulation (NBIA) BPAN and other rare conditions. With Research, Awareness, Resources and a wealth of shared Experiences, we can collectively, bring Rare Diseases out of the shadows, into the sunlight. BPAN is more than a clinical name; BPAN has a face and a heart – it has the face and the heart of our daughter Eva, OUR Eva Magoo.
