Monday, January 6, 2014

Austin: A Young Man Battling Muscular Dystrophy


              

~~AUSTIN~~


      Happy New Year! It's a brand new year and we are excited to have a Precious Child we'd like to introduce you to. This is Austin, He's 16 years old and he is one of the most sweet 16 year olds you will ever meet. He LOVES Bailee Madison (http://en.wikipedia.org/wiki/Bailee_Madison) and has a dream to meet her and ride on Splash Mountain in Disney World with her.

      When Austin was born, he was over 9 pounds and his shoulder was dislocated at birth and he required oxygen. His parents were so happy to have a little baby, but after being home for a few months, Austin started choking and having trouble keeping food down. Austin's parents took him to countless doctors and he had multiple medical screenings and tests. Doctors were puzzled with Austin, and didn't have a diagnosis for his parents. Doctors were calling his case a mystery, and saying that Austin was a puzzle because his tests were coming back normal. They were given a multitude of diagnoses. Failure to Thrive was one diagnosis that he received. Basically, Austin wasn't gaining weight and growing like an average child should. Typically Failure to Thrive is an underlying symptom of other major illnesses. Austin also received a diagnosis of Ataxia (http://en.wikipedia.org/wiki/Ataxia) , or lack of voluntary muscle movements, as well as dysmetria (http://en.wikipedia.org/wiki/Dysmetria). He also had chronic vomiting and developmental delays.

      Austin finally received a diagnosis when he was ten years old. Can you imagine 10 years of not knowing the exact cause of all that Austin had and still has to endure??? Austin was diagnosed with Congenital Muscular Dystrophy. (http://ghr.nlm.nih.gov/condition/ullrich-congenital-muscular-dystrophy) A year after his diagnosis Austin's Congenital Muscular Dystrophy diagnosis was changed to Progressive Muscular Dystrophy. There are over 30 different types of dystrophy, with the most common being Ducchenne's Muscular Dystrophy. The cause of dystrophy is the absence of a protein in the body called dystrophin. You can view more about Dystrophin here: http://ghr.nlm.nih.gov/gene/DMD . Austin also has scoliosis (abnormal curvature of the spine) as well as hip dysplasia, which is a misalignment of the hip joint. The hip dysplasia is Austin's most recent diagnosis and he has a good bit of pain from it.

      Over the past few years Austin has become weaker and weaker. He was able to walk by holding someone's hand, then he regressed to having to use a walker. He eventually wasn't able to use the walker any longer and regressed to a wheelchair and now he is in a power chair. His parents have watched him get weaker every day, and I can't imagine the pain they feel to see their child going through this. Austin doesn't have the ability to do some of the daily tasks that most of us take for granted. He needs to be carried to go to the restroom, he has to have someone brush his teeth for him, and he does not have a handicap accessible home. Ramps for his home are not an option at this time and his parents basically have to carry Austin to areas where his chair cannot go. Austin also has to have help dressing, combing his hair and all other basic needs. Austin chokes in his sleep and his parents have to be near him to be sure he's able to breathe. He cannot sit up without assistance and can barely roll over himself. Even though Austin struggles so much on a daily basis, he is always wanting to make others happy. He will go out of his way to try to make someone else smile. Please take a moment and stop over and say hi to Austin : https://www.facebook.com/HelpAustinMeetBaileeMadison You can see from his pictures that he has a smile that could help brighten most anyone's day.

      I'm very honored to have a chance to write about Austin. He's an amazing young man and I know that he will have his dream come true very soon of meeting Bailee Madison and riding on Splash Mountain with her. He's a very determined young man and he has a very supportive family. Please check out his sister's website as well https://www.facebook.com/CalistaCares?fref=ts She is very passionate about helping others with disabilities and loves her brother very much. Thank you for taking the time to read about Austin. It's my hope that this blog has helped others understand more about the struggles that individuals and families go through when they are living with Muscular Dystrophy. Also, thank you to Austin's mom for telling us about her son, so we could share his story with you.

Wednesday, December 11, 2013

Tiny Taylynn's Big Battles



~*~TayLynn~*~




Introducing a little sweetie by the name of TayLynn. She just turned a year old and is as sweet as can be! Taylynn was diagnosed with a congenital heart anomaly. This anomaly is known as Ebstein’s anomaly. (http://en.wikipedia.org/wiki/Ebstein's_anomaly) In Ebstein’s anomaly, the tricuspid valve (the valve between the chambers on the right side of your heart) doesn’t work properly. Blood tends to leak back through the valve making the heart less efficient in pumping. This can cause the heart to work harder and lead to an enlargement of the heart.

Taylynn was diagnosed with IUGR (intrauterine growth restriction) This is a condition where an unborn baby is smaller than it should be due to not growing at a normal rate inside the womb. Delayed growth, puts babies at a high risk for having decreased oxygen levels at birth, low resistance to infection, low blood sugar, among other health issues. She also has had a right femoral artery clot (this is the large artery in the right let). She had gangrene in her lower right leg, and TayLynn had to have her right foot amputated due to a blood clot and complications. She has partial vocal cord paralysis. Vocal cord paralysis can affect a person’s ability to speak, and even breathe. TayLynn also has some Nutrition and metabolic symptoms among other diagnoses. She’s currently in the hospital and doctors are concerned about her kidneys. Please take a moment and stop by her website and send her some love and support. https://www.facebook.com/PrayersForTinyTaylynn

Thank you to TayLynn’s grandma for allowing us to feature her on our blog. She’s such a sweet little girl, and definitely a tough one too! We are looking forward to seeing TayLynn continue to grow and conquer any challenge that comes her way!



Saturday, December 7, 2013

Anthony's Battles: Pint-Sized Super Cutie!

~*~Anthony~*~

Meet Anthony! He has a serious infectious smile, how cute is he?!?!  This little guy is 1 year old and has a number of health issues. 

Anthony's labor was very difficult, and when he was born, he was not breathing. The doctors were able to get him breathing again, but they feared he had an infection and transferred him to a local Children's hospital and started him on aggressive antibiotics. Since birth Anthony has been hospitalized numerous times and has countless number of medical procedures. In January of 2013, Anthony was diagnosed with PVL (http://en.wikipedia.org/wiki/Periventricular_leukomalacia) Due to oxygen loss during his birth, the white matter (http://en.wikipedia.org/wiki/White_matter) of his brain is dead around the ventricles in his brain. His doctors are unsure what this will cause in the future for Anthony, but they feel he is at high risk for Cerebral Palsy in the future. 

This little guy currently has a a long list of diagnosis, which include: hypotonia (low muscle tone), failure to thrive (unable to gain weight), strabismus (eyes do not align in the same direction), severe sleep apnea, hypoglycemia (low blood sugar), dysphagia (difficulty swallowing) and a number of other diagnosed conditions. He is G-Tube dependent. He currently sees 15 different specialists and has physical, occupational, speech and feeding therapy. Please take a moment and stop by his page and learn even more about this little adorable guy! https://www.facebook.com/AnthonysPromise. A big thank you to his mommy for allowing us to share his story. Anthony has been through so much at his young age, but he never ceases to smile. He's a very happy little guy and I have no doubt he will stay that way! 

Princess Maelan's Fight with Familial Mediterranean Fever Syndrome

~*~Maelan~*~

 I would like to introduce you to this little sweetheart. Her name is Maelan and she is  6 years old. Maelan was diagnosed with something called Familial Mediterranean Fever Syndrome. This syndrome causes painful inflammation in the lungs, joints, and abdomen. It also causes reoccurring fevers. Familial Mediterranean Fever Syndrome is inherited, and most often found in people of Mediterranean decent, however it may affect anyone.. There is currently no cure for this disorder, there is only treatment of the symptoms. (http://en.wikipedia.org/wiki/Familial_Mediterranean_fever)

This disorder causes Maelan to run high fevers at least once per month. During the times of her fevers, she has mouth ulcers and is unable to eat or drink much. Each time she has a fever, it takes her about a week or so to recover. Maelan suffers from joint pain and muscle pain as a result of this disorder. She also has joint hypermobility mainly in her knees and legs. This causes her joints to swell and hurt. Maelan is currently on a medication that she has to receive via injection. It's primarily a drug that treats rheumatoid arthritis in adults, but Maelan is taking it to help with her joint swelling and pain. Maelan has spent countless number of days in the hospital due to her fevers. Most recently she was in the hospital at the end of October for 5 days with a fever as high as 105.5! Maelan had a grand maul seizure (http://www.mayoclinic.com/health/grand-mal-seizure/DS00222) for 6-7 hours and remained in a seizure for 24 total hours. She ended up spending 12 days in the PICU. This super girl spent 3 weeks in the hospital and was finally able to go home. She also recently had a G-Tube placed to help her with nutrition. While in the hospital, she lost a significant amount of weight and coupled with her not being able to eat or drink much when she has her fevers, this was the best option for her. Maelan just was able to come home after another few days in the hospital. Please take a moment and stop over and show her some love and support. https://www.facebook.com/MaelansMission 

A Big thank you to Maelan's mommy for allowing me to feature her on our blog. It never ceases to amaze me the strength of these little ones who endure so much at such a young age. I can't imagine what it must be like for Maelan, but she certainly keeps a positive outlook and a smile on her sweet face! Keep it up Maelan, we know you've got this!


Saturday, November 30, 2013

Austin's Battle With ALL



~*~Austin~*~

Meet Austin! Austin is 17 years old and is battling cancer. Back in February of this year, Austin had a stubborn cold that just wasn't going away. He had some swollen glands in his neck and two on the back of his head that the doctor wanted to keep watch on. His doctor gave him a steroid shot and some antibiotics and he started feeling better. After 3 weeks, Austin's glands were still swollen. In addition to the swollen glands in his neck, he also had swollen nodes on his chest. His mother immediately took him to the doctor,and they ran some blood tests. His doctor called about 2 hours later stating that the preliminary tests showed that Austin had Leukemia. Absolutely devastating news that no one should ever have to hear, especially a young man with his whole life ahead of him. Austin was diagnosed with Pre-B Cell Acute Lymphoblastic Leukemia (http://en.wikipedia.org/wiki/Acute_lymphoblastic_leukemia) The prognosis for patients diagnosed with ALL is much better in recent years that it had been in the past. This is partly due to much more sophisticated medical tests and advancements in treatment. 

Austin was sent to a local Children's hospital to start receiving his chemotherapy. He spent a little over a week in the hospital after his initial round of chemo, and he was diagnosed with a staph infection that left him in and out of the hospital for weeks. Since his diagnosis, Austin has been through many ups and downs. He most recently had a spinal tap and is currently awaiting the results. He continues to fight this awful disease and is definitely not going to let it get the best of him. Please take a moment and stop by his Facebook page and show him some support. https://www.facebook.com/AustinJamesHorne You can read more about Austin and his family does an excellent job of updating and letting his supporters know how he is doing. Orange is the awareness color for Leukemia, so don't forget to wear your orange in support of Austin and the many other leukemia fighters our there! A huge thank you to Austin's mom for contacting us and letting us share her amazing son's story. Don't forget to stop by his page and read the updates of how Austin is winning his cancer fight!

Thursday, November 21, 2013

Blake's Journey: A Two Year Old Superhero Battling Erb's Palsy

~*~Blake~*~

Meet Blake! He's a 2 year old superstar! He's been through so much in his 2 short years, but as you can see, he's still smiling :) 

Blake's entry into the world was a rather traumatic one. He had severe bruising and Erb's Palsy of his right arm. (http://en.wikipedia.org/wiki/Erb's_palsy) Erb's palsy is paralysis of of the arm. On average, about 1 in every 1000 births result in a child having Erb's palsy. It is typically caused when a newborns neck is stretched to the side during a difficult delivery. You can read more about Erb's Palsy and see pictures here: http://orthoinfo.aaos.org/topic.cfm?topic=a00077.  At just slightly less than 1 month old, Blake had a CAT scan of his heart. The scan showed that Blake had a Coarctation of his aorta. The aorta is a large artery of the heart. When someone has Coarctation, the aorta is narrowed. (http://en.wikipedia.org/wiki/Coarctation_of_the_aorta) Coarctation is twice as likely in boys than in girls at birth.  During this time, Blake also had to have a bronchoscopy (a scope to take a look at his airway) Blake was diagnosed with a subglottic stenosis (narrowing of the airway) While Blake was in recovery from his procedures, we went into respiratory distress. During the course of being admitted he stopped breathing three times. After multiple tests, it was discovered that Blake had multiple health issues. In just two short years he's had multiple hospital stays, surgeries, and countless procedures. Among these procedures, was a Chiari Decompression. He had this surgery just shortly after turning 1 year old. (http://en.wikipedia.org/wiki/Arnold%E2%80%93Chiari_malformation) Blake has endured nerve surgeries to his right arm, removal of adenoids, and so many scopes to remeasure his airway. 

Blake would love it if you could stop by his website and show him some love and support. There you can learn more about him and his daily struggles and triumphs. https://www.facebook.com/blakestone2011. I would like to say thank you to Blake's mommy for allowing us to share his story. It's always a honor to learn something new and to help spread more awareness about health issues that I myself knew little of. Thank you for reading and I hope you learned a little something more as well. Thank you! 


Wednesday, October 30, 2013

A Little Peek Into Shyannah's World

~*~Shyannah~*~


Meet Shyannah. She's 5 years old and she's definitely a trooper. Here is her story:


Shyannah, AKA ShyShy has had many obstacles to overcome in her 5 years. She has had lead poisoning. Her family lived in a home for the first 2 years of her life, not knowing there was lead paint. ShyShy's levels for lead were at a 23 when anything under 8 is normal. As a result of this lead poisoning, ShyShy has severe mental health issues. She has Obsessive Compulsive Disorder, Attention Deficit Hyperactivity Disorder (ADHD) , Bipolar Disorder, Oppositional Defiant Disorder (ODD) http://en.wikipedia.org/wiki/Oppositional_defiant_disorder. ShyShy also has Intermittent Explosive Disorder (http://en.wikipedia.org/wiki/Intermittent_explosive_disorder) panic disorder, as well as PICA. (http://en.wikipedia.org/wiki/Pica_(disorder))


Among the multiple mental health issues that ShyShy deals with, she is also physically , emotionally, and mentally delayed. She also has cataracts in both of her eyes. She will eventually need to have these removed to prevent her from going blind. Her health issues include anemia; insomnia; night terrors; Obstructive Sleep Apnea (osa); allergies; a compromised immune system and mild microcephaly; chronic sinusitis; eczema; asthma; hypotonic; severe motion sickness. Shyshy loves monkeys and loves jumping on her trampoline. She loves parks and swings and slides.  Please take a moment and visit her website at https://www.facebook.com/LivingInShyannahsWorld There you can find more information and update on her conditions. Please take a moment and stop by to show her some love and support.


A big thank you to ShyShy's mom for allowing us to feature her on our blog. She's an amazing little girl who has many obstacles to overcome , but I definitely have no doubts she will be able to handle everything that comes her way.