FOREVER LOVED SESSION: Please read, share and pray for this little boy. Meet sweet, Maximus Barone. Born on November 13th, 2012, Maximus just celebrated his 2nd birthday spending the day at Disneyland with his family. This was everyone’s first time experiencing the fun of Disney and they enjoyed all of it! Sarah, Max’s Mother, said her pregnancy was perfect. He was born on a chilly November morning in Maryland but it was described as beautiful. Aside from some minor blood gas issues, he was a perfect 8-pound boy! The youngest of 4 children, Max has always brought so much joy to everyone who meets him. From his deep blue eyes and infectious giggle, to his love of singing and adorable sense of humor. Max is truly a blessing to his entire family. Max met all of his milestones on time and was developing as he should. In early September 2014, Max began having some minor issues with his balance. He was stumbling more often while also struggling with frequent vomiting. He was admitted to Radys Childrens Hospital in San Diego for a 3 day observation. After an MRI, lumbar puncture, many blood draws and a variety of skin tests, it was discovered that there was an abnormality in the right frontal lobe of his brain. These findings, along with the results of his EEG, Max was diagnosed with a seizure disorder to which he was prescribed a medication and sent home. His seizure frequency and vomiting increased in the coming weeks. While most of his seizures were on a smaller scale, he then began to have some Grand Mal seizures.These types of seizures are very big and extremely dangerous. Max seemed to become increasingly tired and more fatigued than usual. Growing concern led to many visits with Neurologists and Geneticists from San Diego to UCLA. Sarah would consult via phone with medical professionals across the United States and even some throughout parts of the UK. After several weeks, their family was given the most devastating of news. Max has a terribly, rare disease called Late Infantile Batten disease, or LIBD. This disease is an inherited genetic disorder, causing a build up of lipopigment in the tissue of the brain. A very rare and terminal disease. Batten disease is a form of fetal inherited disorder that affects a persons nervous system. It starts during childhood and in some cases the signs are rather subtle, taking on the form of behavioral and personality changes, as well as clumsiness, slow learning, or stumbling. The symptoms presented by Batten disease are connected to a buildup of substances known as, lipopigments, in the persons bodily tissues. Lipopigments are comprised of fats and proteins. Vision loss is an early sign of Batten disease and can be an indicator that is caught during an eye examination. (web MD) After doing further research on the Batten Disease, Sarah was tested for the gene and found out that she and Max’s father were both carriers. It is possible to have children without this disease but it is also possible to give birth to a child that will get it. This is not a normal test that is performed or required for a pregnancy which made what Sarah heard, all the more difficult to understand. Batten Disease is horrible to witness, but absolutely horrendous to endure. Max will most likely begin to exhibit more clumsiness as he loses motor skills, more frequent seizures, a loss of eyesight, poor muscle tone, and eventually he will lose the ability to walk talk sit and stand. There is no way to define how quickly these symptoms will start to show but through reading all happen very rapidly. There are no words to describe what Max and his family are to endure. The life expectancy for Max is between 8 and 10 years old and Sarah plans on making each day as memorable as possible for him. Medical science has not yet discovered a specific treatment that will either stop of reverse the symptoms of Batten disease at this time. (disabled-world) Will he ever begin to speak in full sentences? Attend Kindergarten? Play a sport? This deterioration of his body can happen at any given time and daily they are grappling with this eventually happening. To know what his future holds and what he will never be able to do or experience is so unbelievably painful for this family. Help me raise awareness and bring light to something many know little about. Lets all look into this disease and see what can be done for more research, we must find a cure! Max along with thousands of others deserve to have a life long lived and not have to endure this tragic pain. Max will continue to be in my thoughts, and I will update you all on his progress in a few months. Please pray for this family and the daily trails they face. Sarah told me yesterday, Has anyone ever told you that you have this gift, this amazing way of making the people you meet and photograph, feel as if they, have know you forever?? I instantly felt comfortable to share with you our pain and our struggles. The magic you can create of my son will be irreplaceable. These pictures, and Having Lindsey photograph my son on his 2nd birthday, will allow us to hold onto the memories of Maximus without any of the negative effects of this monster, Batten, Disease. I cannot do these sessions alone and I need your help, so I can continue to help others in need. The link to watch the video is- youtu.be/0hnmJ2LZnYk (if the video doesnt open on the facebook app go to your browser.) click here to buy the t-shirt, tank top, hoodie: https://represent/team-love-song PLEASE WATCH AND BUY A SHIRT NOW IF YOU HAVENT YET ALREADY!! Only 5 days left to reach out goal. LIKE Love Song Events & Photography to follow up with this sweet client and many other clients of mine who wish to share their journeys with you. lovesongphotography - Southern California Photographer
Posted on: Fri, 14 Nov 2014 20:14:47 +0000
Trending Topics
Recently Viewed Topics
© 2015