Halina's Mitochondrial Fight
Donation protected
This is my beautiful 18-month-old niece Halina Moreno. About one year ago, Halina became very ill and spent many months in and out of Lurie Children's Hospital in Chicago. After nearly three months of several MRIs, CAT scans, DNA test, and more, we received the saddening news that after extensive testing, Halina had been diagnosed with a very rare mitochondrial disease by the name of Leigh Syndrome .
Mitochondrial diseases, such as Leigh Syndrome, result from failures of the mitochondria, which are 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. Symptoms of Leigh's can include the loss of basic skills such as head control, walking and talking. These may be accompanied by other problems such as irritability, loss of appetite, vomiting and seizures. Eventually, the child may also have heart, kidney, vision, and breathing complications. The prognosis for Leigh Syndrome is poor and individuals typically live anywhere from a few years to the mid-teens.
Unfortunately, Halina has been suffering from many of the common symptoms of this horrendous disease. Within the past 3 months, Halina accomplished a huge milestone and built up enough strength to be able to eat on her own. We were so relieved that Halina no longer needed to be fed through a nasogastric tube.
One month ago, on a family trip to Mexico, Halina's health took a turn for the worse. She had developed a severe infection to her lungs and had to be rushed to the ER. After two days at the hospital in Mexico, her infection continued to get worse. We had to fly Halina in an Air Ambulance from the hospital in Mexico to a hospital in Miami, Florida so that she could receive the appropriate medical care. Halina spent 8 days in the Pediatric Intensive Care Unit (PICU) in Miami then was transferred by air to Lurie Children's Hospital in Chicago where she is currently receiving care in their PICU. Halina has been on life support for nearly a month and is fighting very hard to make it out of the hospital as quick as possible. She will be having surgery very soon to receive a tracheotomy. Once she receives the surgery, she will then need to stay in the hospital for at least 2 more months between the PICU and rehabilitation.
My sister and my brother-in-law have put forth so much time, love and courage to provide Halina a chance to live the life that she deserves. It has been extremely difficult for Halina's parents and her family to see this little angel suffer so much just to have a fair chance of life. There has been endless support from family, friends, and the wonderful staff at Lurie Children's thus far which has helped us all stay positive and see the light at the end of the tunnel.
There is a tremendous amount of emotional and financial strain on both my sister and brother-in-law while Halina continues to fight for her life. There is still a long road ahead until Halina will finally be able to come home again and Halina needs the support from as many people she can get it from. I have created this GoFundMe account to help fund the continuous medical expenses that my sister and her husband are paying forward to make sure that Halina can have a fair chance at life. All donations will go directly towards Halina's medical expenses.
I encourage everyone to further research and educate themselves on mitochondrial disease so that we can raise enough awareness to one day find a cure for this horrible disease. The United Mitochondrial Disease Foundation has been working very hard in raising awareness for mitochondrial disease in the efforts to continue research and find a cure.
Halina and her family appreciate all the support and generosity during Halina's long fight. With YOUR support, we are one step closer to seeing this beautiful baby girl smile once again.
Thank you!!!
Mitochondrial diseases, such as Leigh Syndrome, result from failures of the mitochondria, which are 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. Symptoms of Leigh's can include the loss of basic skills such as head control, walking and talking. These may be accompanied by other problems such as irritability, loss of appetite, vomiting and seizures. Eventually, the child may also have heart, kidney, vision, and breathing complications. The prognosis for Leigh Syndrome is poor and individuals typically live anywhere from a few years to the mid-teens.
Unfortunately, Halina has been suffering from many of the common symptoms of this horrendous disease. Within the past 3 months, Halina accomplished a huge milestone and built up enough strength to be able to eat on her own. We were so relieved that Halina no longer needed to be fed through a nasogastric tube.
One month ago, on a family trip to Mexico, Halina's health took a turn for the worse. She had developed a severe infection to her lungs and had to be rushed to the ER. After two days at the hospital in Mexico, her infection continued to get worse. We had to fly Halina in an Air Ambulance from the hospital in Mexico to a hospital in Miami, Florida so that she could receive the appropriate medical care. Halina spent 8 days in the Pediatric Intensive Care Unit (PICU) in Miami then was transferred by air to Lurie Children's Hospital in Chicago where she is currently receiving care in their PICU. Halina has been on life support for nearly a month and is fighting very hard to make it out of the hospital as quick as possible. She will be having surgery very soon to receive a tracheotomy. Once she receives the surgery, she will then need to stay in the hospital for at least 2 more months between the PICU and rehabilitation.
My sister and my brother-in-law have put forth so much time, love and courage to provide Halina a chance to live the life that she deserves. It has been extremely difficult for Halina's parents and her family to see this little angel suffer so much just to have a fair chance of life. There has been endless support from family, friends, and the wonderful staff at Lurie Children's thus far which has helped us all stay positive and see the light at the end of the tunnel.
There is a tremendous amount of emotional and financial strain on both my sister and brother-in-law while Halina continues to fight for her life. There is still a long road ahead until Halina will finally be able to come home again and Halina needs the support from as many people she can get it from. I have created this GoFundMe account to help fund the continuous medical expenses that my sister and her husband are paying forward to make sure that Halina can have a fair chance at life. All donations will go directly towards Halina's medical expenses.
I encourage everyone to further research and educate themselves on mitochondrial disease so that we can raise enough awareness to one day find a cure for this horrible disease. The United Mitochondrial Disease Foundation has been working very hard in raising awareness for mitochondrial disease in the efforts to continue research and find a cure.
Halina and her family appreciate all the support and generosity during Halina's long fight. With YOUR support, we are one step closer to seeing this beautiful baby girl smile once again.
Thank you!!!
Organizer and beneficiary
Ray Covarrubias
Organizer
Elk Grove Village, IL
Diane Moreno
Beneficiary