May 1st is Childhood Stroke Awareness Day; to those who follow our HEROs this particular day of the year holds great importance in our efforts to raise awareness. With this in mind, we would like to present our latest Stroke HERO Alex Ward, a beautiful blue-eyed red head who along with his family has been a regular at the Brendon’s Smile Stroke Awareness Walks.
Hailing from the Great State of Texas, Alex was born in March 2007. He has a big brother, Hayden and a big sister, Hayley who love him very much
Jennifer and Cory (Alex’s parents) realized that he might be a “late developer” when Alex wasn’t sitting up by 6 months. There were a number of other things that caused them to ask questions at his six - month check up. Some of the things they noticed were Alex’s right foot turning out, not rolling over or sitting up, no real interest in playing with toys. Jennifer described Alex as if he had started to act almost lethargic. Jennifer discussed her concerns with Alex’s doctor. He advised Jennifer and Cory to watch and report back regarding Alex’s development. Within two week, Alex started having Infantile Spasms.
Thankfully, the Ward’s family doctor was familiar with the somewhat unusual and rare condition; more importantly he knew the importance of getting medical treatment quickly. Alex was seen by his doctor on a Monday; he was able to get Alex in to a pediatric neurologist at Cook Children’s Hospital in Fort Worth, Texas on Wednesday of the same week. The Wards explained that we lived two hours away and that any tests that could be done that day would be appreciated. The hospital staff demonstrated a measure of compassion to the bewildered parents. After arriving there Alex was being prepped to receive an Electroencephalogram or “EEG” within 15 minutes. The EEG confirmed the Infantile Spasms. Alex’s neurologist, Dr. Acosta then sent us from his office to the hospital to do a 24 – hour video EEG and an Magnetic Resonance Imaging (MRI) the next day.
The Wards spent the night in a room wired for audio and video. In the event that Alex had a cluster of spasms a nurse would come in and explain to the technician in another room what was happening during the episode. The next day hospital staff performed the MRI. The Wards received the news that Alex had SURVIVED a stroke in-utero. Although this news was shocking, Jennifer and Cory had actually just read about a little boy who had infantile spasms and also had a stroke. They feel strongly that God used that little boy’s story to prepare them for their own journey with Alex.
The first priority was getting the seizures stopped. Our neurologist chose Adrenocorticotropic Hormone or ACTH injections to try and stop them. ACTH is a steroid injection that the Wards gave Alex at home daily for 7 weeks. Although they were able to stop the spasms, Alex continued to take an anti-seizure medication as well. They have since changed to a different medicine, Trileptal, Alex still takes it twice a day.
Alex was 7 months old when he was first diagnosed as a STROKE SURVIVOR. Today he participates in a variety of Occupational (OT), Physical (PT) and Speech therapies. He has right side weaknesses, wears a brace on his right foot and doesn’t have use his right hand, YET. He receives Botox injections every 3 to 5 months for the tone in his arm, shoulder and hand. Botox has been very beneficial in promoting more movement with “righty,” as the Wards call it.
Alex turned three last month and started school. He goes 5 days a week where he receives various therapies. He is in a small class with only one other little boy; this allows for alot of one on one attention. Jennifer and Cory are considering other types of therapy for the future and have high hopes for Alex’s progresses.
Alex is a fun and silly little boy – he is so joyful. Although still behind in development compared to peers his age Alex seems to be closing the gap a little at a time. His personality is coming out more and more. He is very social which has made him pretty popular at his new school already. He is somewhat stubborn but his parents know that will be to his benefit in the future. Jennifer, Cory, Hayden and Hayley are very proud of him!!
Jennifer says that they feel they have been blessed in many was throughout their journey so far. They feel blessed to have a family doctor who knew how dangerous the infantile spasms are; blessed to be seen by a neurologist so quickly that lead to get a diagnosis much faster than most. Blessed they were able to stop the Infantile Spasms and blessed at the sheer power of love shown by so many people to Alex and his family. The Wards feel blessed to have met so many wonderful families that are traveling their own similar journeys; and they feel blessed that even though this is a big diagnosis to handle, God has given them peace throughout almost every aspect so far.
Jennifer stated “We pray that we can use Alex’s story to bring HIM glory and we pray that Alex will continue to amaze us with the miracles that we are given daily.”
The members of Brendon’s Smile can confirm without hesitation that Alex is a joy, a blessing, and a joyful loving boy.
Strength. Love. Stubborn (and that little impish smile); for reminding us of the faith that we tend to conveniently forget unless it is needed. For these and so many other reasons Alex Ward has been selected as our May 2010 Stroke Hero of the Month! (but the smile really does do it…don’t you think?)
