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.
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
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.