Anthony's Story

Anthony was born on April 28th, 2010. He had a fight for life at birth with a heart condition and failure to thrive. At 3 weeks old he had to have a NG tube placed to feed him. The question was what is wrong with Anthony? Why is he so sick and weak? After 100's of lab test and several MRI's, and a skin biopsy we still had very little explanations of what was going on in his little lifeless body. In July of 2010 on the 29th he had his first surgery a g-tube was placed and a very painful procedure was done a deep muscle biopsy in his thigh was taken. In Aug we got the phone call that changed our lives forever. Anthony's Muscle biopsy was positive for Mitochondrial disease and we found out that Mito is a terminal disease and most children don't survive there teen years. As parents we asked ok what do we do to treat him? Being told there is no cure or treatment was like getting hit in the face with a board! They told us we will just treat the symptoms as they come. So they put him on special vitamins to help with energy levels. The doctors told us that he would have a battle & Anthony has. But for a little boy who we were told that we were going to lose at just 3 months old he is now a 4 1/2 year old little boy who loves life and always has a smile on his face even while in pain 24/7. He has several health issues including atrial and ventricular PVC's with ventricular tachycardia, dystonia, intestine not working, gut not able to hold food down ,constipation , hypoglycemia, seizures, mobility, balance issues ,hypotonia, dysautonomia, speech issues, kidney stone, failure to thrive and fatigue, low immune system, spinal bifida occulta, urinary retention, apraxia physically and with speech, cleft uvula. Even with all of Anthony's struggles he still smiles that smile that lights up a room. We stated Anthony's Fund in 2011 to help cover all of Anthony medical needs that insurance will not cover. Anthony has several that he needs just to help make his life a little easier for him and our family. We hope that you will join us in our journey to help Anthony have the best chance to survive and to help us make people aware of what Mitochondrial Disease is and how it effects our children and with some awareness we may see a cure for our child or your grandchild, child, niece or nephew, brother or sister. more children die from mitochondrial disease than childhood cancer. 

  

A new chapter in our lives. Our story does not just end with Anthony it  just started there. Anthony has 4 siblings who also battle this awful disease. Each child has there own battle there own story.
Vince  who is 8yrs old is a very laid back little boy that is like any other little boy who has a sister he likes to drive her crazy. We took Vince to see a doctor in April of 2013 for a check up. We found out t that appointment that he was failure to thrive but we had not idea why. We went and seen a specialist to see if they could figure  out the problem and they had no idea what was causing it so we waited and in Sept of 2013 we went to see a different specialist and who decided to run some test. He has a exercise test and lab work and we found out that his body burns energy when he does nothing ( like sleeping) He had joint pain, low tone and was failure to thrive. he was diagnosed in Sept 2013 with mitochondrial disease. We started to do weekly weight checks and found that Vince had lost 7 pounds from Nov to Dec and then another 5 pounds from Dec to Jan 2014 and we knew we needed to do something we had been increasing calorie intake and adding calories to everything that he ate and started him on a special drink to help him gain weight but it only lasted for a short time before he started to loose again. May 22,2014 Vince had a g tube placed and  we are starting to get his weight under control. Vince was diagnosed in March 2014 with Dyslexia, memory learning disorder., processing disorder. he gets PT,OT and intensive ST. In Jan of 2014 Vince was ordered a power wheelchair to help with fatigue and joint pain.

Alyssa is a funny sweet 7year old who loves life and her horse. Alyssa got the diagnosed in Sept 2013 after she was taken to the doctor for leg and joint pain, constipation and urology problems, low tone and some delays she has scoliosis and a cyst in her spine and ADHA. Alyssa gets PT

Isaiah who is 6 got diagnosed in March 2013 after 3 years of leg pain that we were told was "GROWING PAINS" My sweet boy was swept under the rug and was in pain for 3 years because the doctor never thought out side the box. We took Isaiah to a specialist and found he was low tone as well and his little legs that hurt was because his body was breaking down the muscle and he had almost 4 times the amount of lactic acid in his body then he should have had. one month later Isaiah had his 1st seizure that we had ever seen him have then two days later had one while he slept in our bed after a bad spat with leg pain that woke him up. Towards the end of spring we found that he also has disautonomia Isaiah also is believed to haveLombard   .  In Sept of 2013 he was fitted for a power wheel chair to help with that fatigue that he struggles with. He also has breathing problems anytime a virus strikes is nasty head.

Gianna is our sweet baby girl she was born in Sept of 2013 born 6 weeks early, Gianna came home from the hospital with us but a week later ended up in the NICU where she stayed for 30 days. We found that she had been aspirating and had apnea then we found out that she had cleft larynx, sub mucus cleft palette, a cyst on her spine, Hydronephrosis, acid reflux. She had her first cleft repair when she was 3 weeks old and she had her 2nd repair on June 27,2014. Gianna is low tone, she had torticollis, she has several delays and tightness in her hands along with some feeding issues and a tied tongue.

 

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