Meet the five families organizing this Walkathon: the Davids, the MacDonalds, the Petersons, the Pettys, the Rokickis, the Scappaticcis, and the Zerials.
The DavidsReagan was born on Oct. 7, 2000. She was a wonderful baby. At around 6 months it was apparent that Reagan was not hitting developmental milestones. By 9 months, it was clear that something was wrong. Reagan immediately started physical therapy and then occupational therapy to help her gain some skills. We saw many specialists who performed tests and observations to try to discover what was keeping Reagan from developing. Unlike other girls with Rett Syndrome, Reagan didn’t lose a lot of skills during her regression period, because she didn’t have many skills to lose. During the summer of 2002, we received the Rett Diagnosis and our lives changed.  Despite everything she has to face, Reagan is one of the happiest people we know. She is very social and can win anyone over with her smile! Reagan loves to shop, go to school and swim. She enjoys traveling to visit our extended family and going to Disney. She is inspiring in her determination to work hard at all of her therapies. We live in Plymouth Township with Reagan's sister, Chloe (6 months old) and our Golden Retriever, Ella. We love and support both of our girls in every way that we can. Our family is dedicated to finding a cure for Rett Syndrome so that Reagan and many other girls can enjoy all aspects of life. - Molly & Donald David The MacDonaldsAnnie was born on January 6, 2005. A beautiful, healthy, strong little girl that smiled from day one. She was a delight, very quiet, peaceful and delicate. At 9 months of age everything changed. Annie fell off her weight charts, failed to meet milestones and became very sick. She cried for hours inconsolably. Then she had a seizure. Tests were fun and finally at 15 months of age Annie was diagnosed with Rett Syndrome. After the initial shock of the diagnosis wore off and through the process of grieving we decided to do everything we could to help Annie acquire new skills and fight to keep the ones she already had. 
Rett Syndrome is a devastating disease that has robbed Annie of any sort of independence. She is not able to run, color, sing, dance, feed herself, reach for a toy, or tell us her needs and wants. Annie’s autonomic system has been affected, she has trouble chewing and swallowing and is fed through a g-tube for extra nourishment. She has anxiety, poor circulation, severe digestive problems, trouble regulating her breathing and body temperature, disrupted sleep patterns and scoliosis. Annie will need 24 hour care for the rest of her life. Currently there are no treatments or cure for Rett Syndrome.
Despite the grim reality of Rett Syndrome there is hope. Research for Rett Syndrome has uncovered its cause, a genetic mutation in the MECP2 gene. In February, 2007 researchers successfully reversed Rett Syndrome in a mouse model. Treatment and a cure for Rett Syndrome is now within reach. We believe that Rett Syndrome will be the first childhood neurological disorder to be cured but we need your help. Annie’s miracle is around the corner, the science is there, the funding is not. Without private funding our cure will remain decades away. Please help us is making this dream a reality and giving these girls a chance at life!
- Bridget & Scott MacDonald The PetersonsOn February 1, 1998, we welcomed the arrival of our first child, Jillian. Although always a happy and content baby, after several months it became apparent that Jillian was not reaching important developmental milestones like walking or talking. For more than two years, we went from specialist to specialist trying to discover what was causing this failure to develop. In November 2000, we noticed that Jillian was breathing very strangely (in hindsight a hallmark of Rett Syndrome). The next day Jillian suffered the first of many seizures. She was hospitalized for several days, and shortly thereafter she was tested to see whether she had a mutation in the Mecp2 gene. She did, confirming the preliminary diagnosis of Rett Syndrome.
 We live in Novi along with Jillian's seven-year-old brother Drew, her five-year-old sister Kara, and her ever-patient cat Callie. She loves listening to music, watching her favorite TV programs, and -- most of all -- swimming. She is a happy kid whose smile brightens even the darkest day, and we feel very blessed to have her in our lives.
- Colleen & Jeff Peterson The PettysHailey was born on March 20, 2002 and although she came into this world with some immediate health issues, she was a strong, beautiful and happy baby. As time went by, Hailey began to fall off the charts and miss her milestones. She lost her speech and hand mobility and began to suffer from various medical problems. After many tests, we received the devastating diagnosis of Rett Syndrome in August of 2004.
 Although she cannot walk or talk independently, she speaks volumes with her eyes and is a very happy beautiful little angel. Her laughter and smiles light up our lives and are contagious! She is truly a gift from God and has taught us love, patience and kindness to say the least.
Despite the devastating reality of this disease, there is hope for Hailey and the thousands of girls who suffer from Rett Syndrome worldwide. Researchers are working daily to find a cure or treatments for our girls. Please come and join us on 10/10/10 and walk with us as we get closer to a cure!
The RokickisOlivia was born on April 12, 2003. She was our 2nd child and our first and only daughter. She was born 4 weeks early but was a healthy, delightful baby. Around 6-9 months of age, it was apparent that she stopped meeting milestones and was diagnosed with congenital hypotonia at her 9 month check up. Over the next year, her tone did not improve and she steadily lost all her skills as the devastating regression phase took over. Initial tests did not confirm Rett Syndrome but we lived the next year as if she did have it. It wasn't until her 4th birthday while in South Carolina following up at a clinic for another syndrome that a neurologist from Utah thought she had, a Rett specialist discovered that Olivia was never tested for a deletion of the MeCP2 gene that causes Rett Syndrome. Sure enough, we had our confirmation - it was indeed Rett Syndrome that Olivia was suffering from!
 Despite all the good news, Rett Syndrome continues to be a devastating disease that affects Olivia as well as thousands of other girls world wide. Frequent seizures, painful reflux disease, orthopeadic disorders, repetitive hand wringing and teeth grinding, as well as irregular breathing patterns are only a few of the sequalae of Rett Syndrome. With so many researchers and Rett specialists confident that this will be the first curable genetic disorder, significant advances and treatment are just around the corner. Please join us on our walk-a-thon and raise money to help stamp out Rett Syndrome!
-Amy & Jeff Rokicki The ScappaticcisIsabella was born on October 31, 2002, a healthy, beautiful and content baby. She developed normally until the age of 12 - 15 months, when we became concerned she missed a major milestone. Over the course of the next year, we sought consultation of several local specialists, and simultaneously through the same time period, skills she had acquired began to disappear (the regessional stage of RS). Isabella lost the few words she had learned to speak, and the usage of her hands. She developed the repetitive hand movements which we later learned was a clinical characteristic of Rett Syndrome. Finally, a physician suggested testing for Rett Syndrome and the results were positive for the MeCP2 gene mutation. Words cannot describe our devastation! She was just 26 months old, and that call changed our lives forever.
Isabella’s giggles, smiles and big brown eyes bring joy to our lives. She loves being with her family & friends, listening to music, and riding her adaptive bike. Isabella has a sidekick partner in crime, her younger sister Julia. They are best friends who enjoy playing princess dress-up together! She has taught us so much about what is truly important in life and unconditional love! Recently, a gentlemen made the following statement to our family, " not everyone has an angel".......how true, we feel blessed!
We look forward to the day when Isabella and the thousands of girls with Rett Syndrome get back what the disease has taken away. Rett Syndrome is a devastating disorder and we truly believe, along with national specialists that one day a treatment or cure for Rett Syndrome will be discovered. Please come join us on October 10th, 2010 and help make a difference!
-Roberto & Wendy Scappaticci The Zerials“Life is not a matter of milestones, but of moments.” Rose Fitzgerald Kennedy
Please share a moment of your life with us and join us for the 2010 Walkathon to benefit Rett Syndrome Research on October 10, 2010!
Mia Lorraine Zerial was born December 26, 2003. She was beautiful, happy and content to be part of our growing family! She was such a great baby, always able to “go with the flow” of our daily lives and never complained. Early on, in our regular pediatric checkups, concerns were discussed about Mia not meeting the “milestones” that other babies do. We were concerned about her development and started to investigate what was going on. After numerous tests to rule out other developmental issues, the start of intensive physical therapy, in-home therapy, a visit with the neurologist and numerous blood tests, it was confirmed that Mia had a disorder known as Rett Syndrome. Mia began to loss some of the skills that she had attained, such as self feeding; by the time she was just 2 years old. She never spoke a word through all of this, yet her strength is what made us realize that WE needed to be stronger than ever, for Mia, as well as all the new friends we had made within our Rett family!
Mia is not able to feed herself, but still enjoys food. She had a feeding tube surgery in December 2008 and now she is able to get supplemental feedings at night, while sleeping, to ensure she has the most balanced diet and nutrition. It was a difficult decision, but one that we are happy we chose as Mia is healthier now than ever before. Her determination each day is a constant reminder that we made the right choice! Mia also suffers from seizure disorder and regularly takes medication to keep the seizures under control. She has routine EEG tests, blood work and doctors visits to ensure she is kept in the best health. We are very fortunate to have a fabulous team of professionals that help us make Mia’s life the best it can be!
Mia, and all the other girls that live with Rett Syndrome each day, deserve a chance to someday see what life can be like without this devastating disease. It is up to us, as parents, families, friends and supporters to raise the funds to support the constant ongoing research that WILL, someday, be our Quest for a Cure of Rett Syndrome. We ask that you consider our cause and hope that together, we can make a difference!
-Mark and Michelle Zerial |
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