A chance for life for Daniel & Ioan
Don protégé
Please help these little angels, twins boys Daniel & Ioan at only 14 month old both suspected to suffer from Mitochondrial DNA Depletion Syndrome 2 Myopathic TypeThymidine Kinase 2 Deficiency TK2 a rare genetic disease (highly progressive muscle weakness).
For parents Puiu and Monica Coiculescu, this heart breaking news come soon after they tragically lost their daughter Maria with mitochondrial disease. Maria’s symptoms started when she was 14 months old after a febrile respiratory tract infection and passed less than a year after onset.
Daniel & Ioan are born from a twin pregnancy with normal neurological development until the age 13 month old (last month) when they start showing motor dysfunction after a febrile respiratory infection. They both needs oxygen supplementation and night time they’re on BIPAP. In this critical condition they need continue medical care to fight this life threatening rare disease. They need around the clock care and both parents are caring for them day and night in the hospital, holding them when they cry, feed them, watching them not to pull their IV, worrying for them every second. Right now they are in Marie Curie children's hospital Bucharest, Romania and unfortunately there are no options or treatment given to fight this life threatening disease. It’s so devastating for a parent to hear that there’s no cure.
Parents were informed by the current doctor that there’s a clinical trial offered by Dr. Michio Hirano in New York that could give them a chance to live, currently Dr. Michio Hirano serves as Chief of the Neuromuscular Division, Co-Director of the CUMC Muscular Dystrophy Association clinic, and Director of the H. Houston Merritt Center for Muscular Dystrophy and Related Diseases. He evaluates patients with myopathies and other neuromuscular disorders. The eligible patients includes those with genetic mutations in the TK2 gene. Deoxythymidine and Deoxycytidine Treatment for Thymidine Kinase 2 (TK2) Deficiency is a therapy that might give them a chance.Currently a DNA sample was sent in Belgium and the results are pending. As the present doctor states in the attached letter to Dr. Hirano the symptoms have a much rapid progress in the case of the twins compared to their sister Maria and they need to start treatment as soon as possible. There’s no medical insurance to cover the costs to see a specialist overseas or funds to cover future treatment.
Your prayers, thoughts and any help towards Daniel & Ioan treatment would be greatly appreciated. We thank you in advance for anything you can donate, and promise to keep you informed in this hard journey.
Thank you so much and God bless!
For parents Puiu and Monica Coiculescu, this heart breaking news come soon after they tragically lost their daughter Maria with mitochondrial disease. Maria’s symptoms started when she was 14 months old after a febrile respiratory tract infection and passed less than a year after onset.
Daniel & Ioan are born from a twin pregnancy with normal neurological development until the age 13 month old (last month) when they start showing motor dysfunction after a febrile respiratory infection. They both needs oxygen supplementation and night time they’re on BIPAP. In this critical condition they need continue medical care to fight this life threatening rare disease. They need around the clock care and both parents are caring for them day and night in the hospital, holding them when they cry, feed them, watching them not to pull their IV, worrying for them every second. Right now they are in Marie Curie children's hospital Bucharest, Romania and unfortunately there are no options or treatment given to fight this life threatening disease. It’s so devastating for a parent to hear that there’s no cure.
Parents were informed by the current doctor that there’s a clinical trial offered by Dr. Michio Hirano in New York that could give them a chance to live, currently Dr. Michio Hirano serves as Chief of the Neuromuscular Division, Co-Director of the CUMC Muscular Dystrophy Association clinic, and Director of the H. Houston Merritt Center for Muscular Dystrophy and Related Diseases. He evaluates patients with myopathies and other neuromuscular disorders. The eligible patients includes those with genetic mutations in the TK2 gene. Deoxythymidine and Deoxycytidine Treatment for Thymidine Kinase 2 (TK2) Deficiency is a therapy that might give them a chance.Currently a DNA sample was sent in Belgium and the results are pending. As the present doctor states in the attached letter to Dr. Hirano the symptoms have a much rapid progress in the case of the twins compared to their sister Maria and they need to start treatment as soon as possible. There’s no medical insurance to cover the costs to see a specialist overseas or funds to cover future treatment.
Your prayers, thoughts and any help towards Daniel & Ioan treatment would be greatly appreciated. We thank you in advance for anything you can donate, and promise to keep you informed in this hard journey.
Thank you so much and God bless!Organisateur
Cristina Boudreau
Organisateur
Torrance, CA
