Meet the five families organizing this Walkathon: the Davids, the MacDonalds, the Petersons, the Pettys, the Rokickis, the Scappaticcis, and the Zerials.
Reagan 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
Annie 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.She is able to stand independently and walks with assistance. She doesn’t say any words but speaks volumes with her engaging eyes and infectious giggles. Annie loves music, animals, people, and going for runs in the jogging stroller but her favorite times are spent playing with her brother and sister. Annie is in preschool 4 days a week and attends occupational therapy, physical therapy, hippotherapy, animal therapy and augmentative communication. She has a beautiful personality and an attitude of strength and determination. Annie teaches us about love, patience, acceptance, hope and faith on a daily basis. She truly is our angel.
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
On 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
Hailey 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.
She is 100% dependent on others to assist her with everything. She suffers from poor circulation and cannot regulate her body temperature. She often suffers from anxiety, seizures, disrupted sleep and Parkinson-like tremors. She communicates with her beautiful blue eyes and switches and she gets around with the assistance of others in her wheelchair. She wears braces and takes many medications throughout the day for seizures and severe Acid Reflux. She receives physical, occupational and speech therapy and attends Glen H. Peters School in Macomb, MI. Hailey loves to hang out with her 13 month old twin brother and sister and loves, animals, Dora and Diego!
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!
Isabella 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.
On a daily basis "Bella" receives medication to control her seizures and acid reflux. She attends physical, occupational, music, speech & horse therapy. Through all her hard work she has strengthened her core region and continues to give it her all!
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
“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!
Currently, Mia is learning to walk with the assistance of a gait trainer (walker). She loves to stand, supported, and now is able to walk aided with the support of another person as well. She is doing AMAZING work and we are so proud of all she has accomplished! Mia also attends school each day and enjoys the company of her peers and the friends she has made. It is very apparent that Mia knows who her friends and family are, and even though words are not verbally spoken, Mia and her friends share conversations through their actions and eye contact. Mia is very aware of her surroundings and loves to be on the go, just as she did when she was an infant. Mia enjoys our family outings and all that she is able to be exposed to!
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