Mom2mitokids
DIS Veteran
- Joined
- Jul 22, 2010
Hi everyone,
Newbie here. Starting Korissa PTR. We don't have date yet(looking at Nov 14th-20th or March 20th-26th). We just got together with her Wish Granter last night. They happened to be my youngest daughter Granters too as she had a wish(I wish I knew about this board). I started this PTR last night, but unfortunately we ended up taking Korissa to the ER. She was have chest pains that was affecting her left arm. All test came back ok. Her blood pressure was low and she was having high HR, but they released her at 3am. She went to the doctors today and he thinks it's her GERD acting up.
Anyways...My name is Kris and I have 5 kiddos. I have been married for 20 years to a wonderful guy named Scott. Kids are...Kerri-18, Korissa-16, Kyra 14, Steven-10, and Kylee-7. Kylee and Korissa both have a disease called Mitochondrial Disease. Since we have the maternally inherited form all the kids and myself have it, but it's Korissa and Kylee that have it the worse and unfortunately..Kylee got the worse out of all of us. Scott has been out of work for over a year, so life has been difficult. We really can't wait to just get away from all this stress.
What is Mitochondrial Disease
Mitochondrial diseases result from failures of the mitochondria, specialized compartments present in every cell of the body except red blood cells. Mitochondria are responsible for creating more than 90% of the energy needed by the body to sustain life and support growth. When they fail, less and less energy is generated within the cell. Cell injury and even cell death follow. If this process is repeated throughout the body, whole systems begin to fail, and the life of the person in whom this is happening is severely compromised. The disease primarily affects children, but adult onset is becoming more and more common.
Diseases of the mitochondria appear to cause the most damage to cells of the brain, heart, liver, skeletal muscles, kidney and the endocrine and respiratory systems.
Depending on which cells are affected, symptoms may include loss of motor control, muscle weakness and pain, gastro-intestinal disorders and swallowing difficulties, poor growth, cardiac disease, liver disease, diabetes, respiratory complications, seizures, visual/hearing problems, lactic acidosis, developmental delays and susceptibility to infe
As of right now..theirs is no cure...
Korissa was born on Oct.27, 1993. She was born at 39weeks, but was really small. She weighed 6lbs 1 oz. She was always a sleepy baby and had a weak suck. Ped couldn't find anything wrong with her. At her 6 month checkup I brought her in because she had an upper respiratory infection and an ear infection. This is the time the Ped found a heart murmur. We were referred to a Cardiologist. This is were we found out she had an Atrial Septial defeat. He told us with this type of defeat..Korissa wouldn't see any side effect. This wasn't true. She was always had blue tinge lips and slept a lot. She would wake up at 8am...take a 4 hour nap, and then be ready for bed at 7pm. She was hospitalized many time due too upper respiratory infection/pneumonias. She also has had many medical procedures and surgeries through her years. Her biggest surgery was when she was 2. She finally had her open heart surgery to close her hole in her heart. The Cardio thought the hole was a size of a dime, but it turned out to be a size of a Quarter. Korissa had some complication and had to go back to the OR and redo the patch...which met going back on the heart lung bypass. She spent 2 weeks in the hospital. From age 2 too now she has had a lot of issues she has been dealing with GERD,Ptosis, developmental delays, Fatigue issues, heat/cold intolerence and is sick at least once a month with high fevers and colds. My next post I will tell you how we came about Mito. Here's a picture of our family.
Starlight Foundation Gala
Newbie here. Starting Korissa PTR. We don't have date yet(looking at Nov 14th-20th or March 20th-26th). We just got together with her Wish Granter last night. They happened to be my youngest daughter Granters too as she had a wish(I wish I knew about this board). I started this PTR last night, but unfortunately we ended up taking Korissa to the ER. She was have chest pains that was affecting her left arm. All test came back ok. Her blood pressure was low and she was having high HR, but they released her at 3am. She went to the doctors today and he thinks it's her GERD acting up.
Anyways...My name is Kris and I have 5 kiddos. I have been married for 20 years to a wonderful guy named Scott. Kids are...Kerri-18, Korissa-16, Kyra 14, Steven-10, and Kylee-7. Kylee and Korissa both have a disease called Mitochondrial Disease. Since we have the maternally inherited form all the kids and myself have it, but it's Korissa and Kylee that have it the worse and unfortunately..Kylee got the worse out of all of us. Scott has been out of work for over a year, so life has been difficult. We really can't wait to just get away from all this stress.
What is Mitochondrial Disease
Mitochondrial diseases result from failures of the mitochondria, specialized compartments present in every cell of the body except red blood cells. Mitochondria are responsible for creating more than 90% of the energy needed by the body to sustain life and support growth. When they fail, less and less energy is generated within the cell. Cell injury and even cell death follow. If this process is repeated throughout the body, whole systems begin to fail, and the life of the person in whom this is happening is severely compromised. The disease primarily affects children, but adult onset is becoming more and more common.
Diseases of the mitochondria appear to cause the most damage to cells of the brain, heart, liver, skeletal muscles, kidney and the endocrine and respiratory systems.
Depending on which cells are affected, symptoms may include loss of motor control, muscle weakness and pain, gastro-intestinal disorders and swallowing difficulties, poor growth, cardiac disease, liver disease, diabetes, respiratory complications, seizures, visual/hearing problems, lactic acidosis, developmental delays and susceptibility to infe
As of right now..theirs is no cure...
Korissa was born on Oct.27, 1993. She was born at 39weeks, but was really small. She weighed 6lbs 1 oz. She was always a sleepy baby and had a weak suck. Ped couldn't find anything wrong with her. At her 6 month checkup I brought her in because she had an upper respiratory infection and an ear infection. This is the time the Ped found a heart murmur. We were referred to a Cardiologist. This is were we found out she had an Atrial Septial defeat. He told us with this type of defeat..Korissa wouldn't see any side effect. This wasn't true. She was always had blue tinge lips and slept a lot. She would wake up at 8am...take a 4 hour nap, and then be ready for bed at 7pm. She was hospitalized many time due too upper respiratory infection/pneumonias. She also has had many medical procedures and surgeries through her years. Her biggest surgery was when she was 2. She finally had her open heart surgery to close her hole in her heart. The Cardio thought the hole was a size of a dime, but it turned out to be a size of a Quarter. Korissa had some complication and had to go back to the OR and redo the patch...which met going back on the heart lung bypass. She spent 2 weeks in the hospital. From age 2 too now she has had a lot of issues she has been dealing with GERD,Ptosis, developmental delays, Fatigue issues, heat/cold intolerence and is sick at least once a month with high fevers and colds. My next post I will tell you how we came about Mito. Here's a picture of our family.
Starlight Foundation Gala
...
I know she won't drink the barium and not sure they can put it in the G tube. The last time she had barium she ended up in the ER 2 weeks later with cement BM. Needless to say...she will be hooked up to Pedialyte all day tomorrow after the test instead of her formula. 
I am so glad she is getting her wish! 
- so I would definitely shoot for November!! 
