Robbie a true Warrior !!!
Organized by: Jela N Robert Vaught
EVENT DATE May 31, 2015
With much prayer and support we have decided to create a Fundraising page in support of Robbie's medical needs. It has been a long journey since our son had his first seizure. I have been home raising our son since the day he was born he is now almost 4 yrs. old. My husband working has been the only source of income. I have not been able to work due to Robbie's daily care and to ensure that I take care of all his special needs. Yes our precious little boy has special needs. That makes me a special Mom and my Husband a special Dad to be able to take care of him. Our life’s savings has slowly depleted. Using our savings to replace my source of income and to pay for Robbie’s medical bills - past, current and future. Robbie is on a cocktail of medication, daily therapy, and unknown medical attention he may need if he should get sick. We are seeking now to have an in home nurse to help us care for our son and to expand further testing of Robbie's brain and evaluations of is overall health and developmental delays due to the seizures. We don't know what the future looks like for Robbie but surely we will do everything it takes to ensure that Robbie lives life like any child with or without special needs.
Our Journey ~
Our precious boy Robbie was born on July 14, 2011 at Winter Park Hospital Dr. Phillips Baby center. When our son was born his Apgar score was a 9 and we were told he was a perfectly healthy baby. Robbie was doing great the first 6 months of his life until one evening he ran a fever during his evening nap and I found him face down in his crib in a full body convulsion gasping for air having a full blown seizure. I quickly called 911 when they arrived they gave him Valium to stop the seizure. My first thought when I saw Robbie in this state was "Oh my God is my baby going to die?" a parent’s worst nightmare. I was helpless had no idea what I was dealing with or even know what to do other than safely hold my baby boy until help arrived.
The last few years have been a Roller coaster journey. We have been living daily of the unknown. We have had our share of many emergency ambulance transportation and hospital stays with an abundance of test that no little boy should go through. As Robbie started to get older his seizures started to change. We took him to see a neurologist that specialized in Dravet Syndrome. This doctor told us that Robbie was showing signs of a child with Dravet Syndrome. We agreed to the blood test and waited an agonizing three months for the results. December 2012 we were told that Robbie tested positive for Dravet Syndrome. Absolutely the worst nightmare of our lives! My husband and I went through a period of denial, disbelief, anger, not our baby boy, the doctor is wrong, there is no way etc... This went on for a month. Jan 2013 I went to work I mean real work I have never had to work so hard to find out exactly what we had to do next. Yes our son was diagnosed now what? Doctor ordered and EEG and MRI of Robbie’s brain. Once we knew the results and how to treat Robbie he was put on several Epilepsy drugs specifically for Dravet ( which are very limited). We started to manage the seizures a bit. Robbie's type of seizures deals with his nervous system. His body does not know how to regulate his body temperature. If Robbie gets above/below normal temperature he will have a seizure. This includes when he is sick. If Robbie constantly runs a fever he has seizures. Robbie can be indoors or outdoors no matter the temperature he will have a seizure if not kept cool or warm enough not to exceed either. We have to dress him just right. Robbie has a cooling vest for when he runs around outside but it does not always work. Temperature in the house has to be just right if too cold he will have a seizure. We dress him in dri-fit clothes to keep his body temperature as normal as possible. In any of these situations Robbie has emergency rescue meds to help him get out of the seizure. Usually we just put cool cloths on his feet to pull the heat out. When too cold we rub his little body with our hands and wrap him in blankets to warm him up. We do not start out day when we leave the house without all this in mind. We must be prepared at all times. We always carry extra load of preparation when out and about.
Our daily lives consist of never taking our eyes off our boy. We have cameras and intercoms and baby monitors set up throughout the house (still not enough). We have had several situations where we have walked into the living room and our son is face down having a seizure. Yes a horrific seen but quickly we work to safely take care of him and he sleeps it off. Our days are carefully planned out around Robbie. Hot summers we can't be outside unless it's in the pool or a splash pad. We spend eight months out of the year inside. The cooler months we still need to be careful but we risk it and the weather is gorgeous so we give it a try. I sleep with my son wrapped around my arms as much as possible so I can detect seizures. I mostly do not get any sleep as I am up most of the night ensuring he sleeps seizure free. We are exhausted. We need nursing care, possible seizure dog, or any type of device that can detect seizures and alert us. We have tried everything. Robbie has seizures that are motionless. We are seeking a device that will detect heart rate increase and muscle spasms as well as drop in oxygen levels.
Robbie just completed his first year pre-k special education program for children with delays. We are so proud of him. He is truly a little fighter. He has a long way to go. It’s very slow progress but he is doing well. He also has been attending weekly sessions of speech therapy and occupational therapy. Robbie will enter VPK program at his school in Aug 2015. Every day is a journey and we look forward to tomorrow. Thank You.
What is Dravet Syndrome?~
Dravet syndrome, also known as Severe Myoclonic Epilepsy of Infancy (SMEI), is a rare and catastrophic form of intractable epilepsy that begins in infancy. Initial seizures are most often prolonged events and in the second year of life other seizure types begin to emerge. Development remains on track initially, with plateaus and a progressive decline typically beginning in the second year of life. Individuals with Dravet syndrome face a higher incidence of SUDEP (sudden unexplained death in epilepsy) and have associated conditions, which also need to be properly treated and managed. These conditions include:
behavioral and developmental delays
movement and balance issues
delayed language and speech issues
growth and nutrition issues
sensory integration disorders
disruptions of the autonomic nervous system (which regulates things such as body temperature and sweating)
Children with Dravet syndrome do not outgrow this condition and it affects every aspect of their daily lives.
Unless a cure or better treatments for Dravet syndrome and related epilepsies are found, individuals with these disorders face a diminished quality of life. Current treatment options are extremely limited and the prognosis for these children is poor.
The constant care and supervision of an individual with such highly specialized needs is emotionally and financially draining on the family members who care for these individuals.
Additional Information on Dravet & Epilepsy ~
I have included several links below for more information. Spread the word please and share this page with friends and family. We need awareness and need to fight for a cure. Thank You for your thoughtful donations.